Our Pal - Owen M
- Born: 09/09/2006
- Illness: Menkes Syndrome
- Status: Current
- Home Page:
C/O 12 Peaselands
NB: this is a forwarding address for the Pal, we do NOT disclose home addresses
- Parents/Guardians - Michelle
- Interests - Owen really enjoys listening to music, watching movies; especially Minions and Marvel. He loves having stories read to him, enjoys watching sensory lights, balloons, fire engines, pirates and pirate books, Marvel superheroes and cars. Owen can’t/ isn’t allowed to eat orally due to unsafe swallow. As Owen has temperature issues, he loves anything that keeps him warm. Loves paint, play clay, playdough and messy play. He loves all things disney.
- Favourite Colour - Any
- Able to read? - No but enjoys being read to.
- Able to use hands? - No but we do hand on hand for painting and other activities
- Visually/hearing impaired? - No
- Suffers from any developmental delay? - Owen has severe global delay but is helped with daily activities. His developmental age is around 3-4 years old.
Siblings - aged 3 to 16 wishing to receive post
- Olivia 07/08/08
Olivia loves shopkins note pads and drawings, play clay and play dough, she also likes dragons and Dinosaurs and tigers . She has become quite fond of the group Queen. Hair accessories and children's make up. She's also a fan of bean boozled
About - Owen M
Story written 2014
Owen was born on 9th September 2006 and everything was perfect.
My niece born 5 weeks later and it started to become evident things weren’t right with Owen. At three months old he had this breathing holding episode where he went blue and stopped breathing. I managed to get him around and we took him to A&E where he was examined. We were told he had bad reflux and he was sent home with Gaviscon. As the months went on things were still not right. He was still having breath holding episodes, he had no developmental skills, he couldn’t hold his head, a spoon, or even a rattle. Health visitors advised me that he was fine and nothing was wrong, he was just born a bit early.
He failed his 6-9 month check as he couldn’t weight bear – well, basically he couldn’t do anything. I was one of these first time mothers that didn’t have a clue. We took him to the doctors and he visited health visitors every fortnight and they all said he was a slow developer and to try for another baby to bring him on.
After his first birthday I got so fed up as Owen’s physical ability was of a four month old baby. By this point Owen started having physiotherapy and occupational therapy, we also gained a community pediatrician, but I still wasn’t happy.
I took Owen back to the doctor as he was 13 months old and still having reflux and vomiting food, and he wouldn’t really drink anything. The made a referral to the hospital paediatric team where Owen was assessed and another doctor was called into the room. Another assessment was done and my husband and I were told Owen needed an urgent MRI referral as he had severe global delay. Owen had his MRI scan and was sent home. We were in good spirits as we thought he had nothing wrong as the nurse said if there was a problem you will know before you go home. Nothing was said and we went home.
A few weeks later I was holding a positive pregnancy test and two days after that I was holding a letter saying Owen has brain damage due to lack of blood flow. I spoke to the paediatrician and I freaked out as I just found out that not only do I now have a disabled son and the cause was unknown, I was also pregnant too.
We were sent to genetics who believed Owen had a stroke inside the womb and his MRI scan was then sent to the neuro team at Oxford.
After a few months Owen underwent various testing including a lumbar puncture at John Radcliffe Hospital Oxford. At this point I was 21 weeks pregnant with my daughter and all tests that Oxford managed to get all came back clear/negative. Owen’s breath holding was getting worse and it was taking longer to bring him round. One day during a genetics appointment the genetics doctor finally saw it. He was not breath holding at all, it was something called salaam attacks, also known as infantile spasms (epilepsy) and was finally treated with anticonvulsants at the age 21 months old. Owen was also having painful urination which was later confirmed as an over sized bladder which turned into a bladder diverticulum.
Two days before Christmas in 2008 we were called to John Radcliffe hospital for a second MRI scan which confirmed brain damage and again they thought due to lack of blood flow. Owen also had a lot of blood tests taken. In February Owen had a surgical catheter fitted called a suprapubic catheter and he also had more bloods taken for a second opinion as the blood tests in December confirmed low copper levels and low cereoplasmin levels. A sample of hair was also taken. We had a clinic appointment with Owen’s paediatrician which was unplanned and we were called in. Two days later we were also called in to see Owen’s neuro and genetics doctor.
On 24th February 2009 at 14:15, I heard the words NO parent should hear. As you are aware Owen has had several tests done, unfortunately I have some bad news. Owen’s blood tests and hair sample confirm Owen has Menkes disease, for which there is NO cure. Owen may not live to see his third birthday. Menkes is a terminal condition and children (boys) often die in the first decade of life.
Owen’s life and ours spiraled upside down. He lost his ability to feed and became tube fed. He also underwent a bladder diverticulum removal in February 2010 with a gastrostomy fitted at the same time. In May 2010, Owen’s reflux got so bad he vomited his full 200ml feed and this would also bring on a seizure. He ended up being admitted with aspiration pneumonia and ten weeks later he was admitted again with aspiration pneumonia.
On the 9th October Owen was struck with aspiration pneumonia, again brought on by a seizure, which lasted over one hour. He wasn’t allowed his emergency meds due to his night time med that he just had and it could have stopped his breathing. In October we thought Owen was fine and would be coming home the following day. I went home just for one hour to have a bath – this was the first time I EVER left Owen at the hospital. I come back to find Owen in respiratory distress. I was told Owen was in a bad way and may need to go Leicester Royal hospital. The anaethetist came in and basically told me that he’s in the process of losing his battle and in the process of shutting down. They put a nasal passage airway in to open his airway and when it was inserted I was shocked by the amount of secretions that flooded out of Owen.
By October 13th Owen’s health continued to deteriorate. We were basically told to let him go and withdraw all treatment. He wasn’t going anywhere, he just started nursery, he was granted a Make A Wish trip, he had a new room just built, he was not going to die – that was not an option. Owen loves his life and all the experiences he’s had since his awful diagnosis. I demanded help as I wasn’t ready for him to leave me. I knew in my heart Owen wasn’t ready to go. It was understood children like Owen never come off ventilation, I was told nowhere had ICU beds, I stressed he has the care that he needs, he has full resus on his medical records.
Owen was put on a ventilator in the adults icu in our local hospital, he was transferred later that evening to Leicester Royal infirmary to PICU. He stayed there for 21 days, 14 days of that was on a life support machine. During his stay he got ventilation pneumonia, he was put on a CPAP machine called the nippy and this deflated his left lung so he went back on the ventilator. It was the most traumatic time for us all, including our 2 year old daughter.
Owen pulled through after me stressing at him and reminding him only he can make himself better. If he wants to go back to school and have his wish trip to Florida then only he can do it. Two days later Owen was off all breathing equipment and being transferred back to Kettering General hospital on the 5th November 2010.
Owen was very fragile and needed an urgent fundoplication operation. He had this on 27th January 2011. Owen has been going from strength to strength since. He also had his trip to Florida with Make A Wish and this was an amazing experience for us all. One day we would like to go back and show Owen more of Florida as he was still a bit poorly when we went.
We have been taking Owen to Disneyland Paris nearly every year as he loves Disney so much. In December 2011, three days before Christmas, Owen had an emergency suprapupic catheter fitted as his diverticulums returned but much worse than before. His bladder and diverticulums were retaining 1000ml (1L) of urine. He was home for Christmas but he just slept the day away as he was in agony and it was so hard to see him like this. As the months went on the pain never shifted, he cried a lot and even school struggled with him. During his 6-weekly catheter change it became evident what was wrong. Owen’s catheter was placed in the wrong place. It was too close to his urethra, the catheter went into his stoma as usual, but went down the urethra and out the normal route. He was screaming, it is every male’s nightmare, even Owen’s dad was cringing at this and as a parent it was difficult to watch.
After a few months it was decided Owen was to have another bladder op. It was originally decided he would have a mitrofanoff, a very complex procedure. I researched like crazy and as I wasn’t happy it was decided he was to have a vesiocostomy, a stoma which leaks out urine. The operation went well although there were a few complications due to scaring tissue which made the operation difficult. Owen has coped so well post op and he was happy again.
In November 2012 Owen looked so pale, he had a virus that just wasn’t shifting. After a week I was just not happy and I was completely exhausted too. I sent Owen into hospital where he was examined but sent home. Owen become very lethargic and was sleeping constantly so I took him back hospital. This time he didn’t go back home and I demanded he had a blood transfusion as his hb was too low. Owen isn’t a candidate for iron supplements as his ferritin is too high. Two days after being in hospital his health was deteriorating, he was severely anaemic, had pseudonomas upper airway infection and was also a C. diff carrier. It was another disturbing time, he was given treatment including a blood transfusion, and again it was questioned how far are we going to push Owen before we stop treatment. I stressed we never give up on Owen and we do what we can to get him better. He completed his treatment and was discharged from hospital on 23rd December. Owen was all smiles Christmas Eve laughing etc, but Christmas Day he was a bit off again. Boxing day came and Owen was vomiting so went back in to hospital. If Owen starts vomiting he becomes dehydrated quickly and needs potassium supplements. He went home the following day.
On New Year’s Eve we noticed Owen had spots so we started New Year with Owen having chicken pox! This could have taken his life but he managed it and battled through it at home – it was hard work but we got there.
Owen has been fantastic since then, all smiles and laughter. We celebrated his 7th birthday, which was awesome. He had a car called Kettering Mcqueen which he loved and he loves balloons too so he had a balloon modeller. A week later we took him to Disneyland Paris, he was cold but he had a fantastic time.
He is such an amazing boy and he make us all proud. He has met some awesome people including Mr Tumble which he met last year via Rays of Sunshine charity.
I would like to say thank you for reading Owen’s story, please share his page as Menkes is rare and isn’t often thought of when trying to find a diagnosis and is normally misdiagnosed as basic cerebral palsy. I am so grateful for being pregnant with my daughter, if it wasn’t for being pregnant with her then Owen may still be undiagnosed.
Update 4th October 2016
Owen has been really good this month, he started Gabapentin to help with his pain and it is taking some of the edge off. He is due to go to Great Ormond Street hospital next Tuesday for more investigations and symptom management and respiratory review with discharge with a new breathing machine.
Thank you so much to everyone that sent post.
Cheryl, thank you so much for Owen’s lovely canvas and Simpson dvd. The post cards are fantastic especially as Owen is a huge star wars fan.
Thank you to the extra smiles team for both awesome boxes. Olivia’s wall decals are fabulous, the theater is great and we have all had a great time with it. The hungry caterpillar photo frame is beautiful.
Also thank you for the clay charms from Amazon Olivia got stuck into it immediately.
Thank you Bev for both Owen and Olivia’s photo booth props they are fantastic.
Also thank you for your lovely cards too.
Thank you Dottie for our newsletter, Gala day looked so much fun.
Thank you Marty for Owen’s card, it is lovely..
Thank you so much Caitlin for Olivia’s letter which was written by Georgia at Rainbows, it is lovely.
Thank you so much for all you support it truly means a lot.
Update 14th September 2016
Owen has had a reasonably well month, it hasn’t been perfect by any stretch but he is doing ok. He has just reached his milestone birthday which is 10 years. 10 years old and Owen is still here enjoying life the best he can.
We have had a hectic few weeks, despite Owen’s hourly pain/upset, we still don’t understand what is the cause. We managed to go to our friend Lewis J’s Ray of sunshine party, which was fantastic, Owen had oramorph to see if this would help him enjoy the party but unfortunately it didn’t, the gripes are still present.
We also managed to enjoy a fantastic weekend at Chessington with post pals, we made the mistake of giving Owen oramorph again as it shut him down and made him all the more agitated the following day.
Our highlight of this weekend was having the opportunity to spend time with amazing families and spend time with the people that help make my children smile, Olivia especially as she is becoming low lately and is starting to shy away from life. She loved the air walker in our room, it was a dog who she called Alex. We loved the private meet and greets and we all had the opportunity to meet up again with families and the animal meet and greet was superb.
The whole weekend was just fabulous and I have to do a big shout out to Vikki George and Jaymee Fletcher for everything at Chessington it was fantastic and just what we needed. Also thank you for Owen’s gift too, it is lovely.
This weekend we celebrated 10 years of Owen, his party was just out of this world, he had authentic star wars characters celebrate with him. Videos and photos are on Owen’s page, Owen’s fund menkes awareness. It was epic and perfect and despite his pain he battled through and was vocal, happy, and the Mr chuckles we all know and love.
Thank you everyone for your lovely post this month and Owen’s birthday cards.
Thank you Andrea for Owen’s Owl cushion he loves it and snuggles into it, it is soooo soft.
Also thank you for his card it is lovely.
Thank you Jenny for Owen’s lovely dinosaur card, it is lovely.
Thank you so much Owain Murphy from Holland for Owen’s lovely Winnie the poo card
Thank you so much for Owen’s birthday card it is lovely and thank you for your post cards with the otters, Stormtrooper and fighters card with the Jones, also thank you for Owen’s post card from Brighton and the card with the Owls. They are all great and perfect.
Thank you so much for Owen’s rainbow boom and rainbow award. They are lovely.
Thank you Dottie the Dalmatian for both Owen’s and Olivia’s news letters they are fab, you loom cute in your wellies, I also loved the news letter featuring all the wonderful post pals with their litter mates.
I absolutely love Owen’s birthday card too, it is fantastic.
Thank you Kristie for Owen and Olivia’s post card they are both adorable. We have a little zoo near by called Hamerton Zoo, it is nice.
Thank you to the extra smiles team for Owen’s awesome rocket birthday card. Thank you for Olivia’s card too, it did make her smile, also thank you for Owen’s extra smiles card too. It is lovely.
Thank you Sonia from Germany for both Owen and Olivia’s post card, stickers and stamp.. oh wow talk like a pirate day is only in a few days in hamburg.
Thank you so much Despina from the USA for Owen’s birthday card, it is lovely.
Thank you so much Caitlin for Owen’s epic birthday card, I love it, also thank you for Owen’s foam stamps and neon paints, they are perfect.
Also WOW Caitlin, Olivia’s monthly project was brilliant, your adventures sound amazing and to have gifts from every place you visited was fantastic and thank you for my shell candle, it is lovely, Olivia was amazed with your package. Thank you again.
Also thank you for Olivia’s around the world poster, she loves it.
Thank you Lyn for Owen’s awesome minion card, it is lovely.
Thank you so much Chloe for Owen’s birthday card. It is lovely thank you.
Thank you Kate, Xander and Rowan for Owen’s letter, he has had a very busy school holiday.. I hope all is well with you all.
Thank you so much to Kath, Rob, Ben and Alec for Owen’s Simpson card and money, that was lovely of you all.
Thank you Chris for Owen’s birthday card and letter.. I haven’t watched the new avengers with spiderman but my favourite is between captain America and iron man.
Thank you Leanne for Owen’s birthday card, it is cute.
Thank you Holly for Owen’s lovely birthday card, he loves it.
Thank you Richard for Owen’s birthday card and letter, it is perfect.
Thank you Bev for Owen’s modelling clay and Owen’s book and cd they are fantastic.
Thank you Jeanette for Olivia’s card, it is lovely to hear from you.
Thank you Ann for Owen’s card, it is cute.
Thank you Rupert for Owen and Olivia’s letter and coloured sheet and stickers, it is lovely, Olivia loves to hear from animals, Owen does too.
Lastly thank you so much for both Owen and Olivia’s pop figures with candy they are amazing and they both love them so much.
Update 11th August 2016
Owen has had a stable month, although we have had a very busy month.
We had a nice holiday to Blackpool, although Owen is experiencing pain hourly sometimes a bit less, we still had a great time as Owen enjoyed Mummy snuggles on the bench, chair or anything we can find to rest. Although Blackpool is great for Changing Places, we made a lot of use out of them.
We have seen his new respiratory team at Great Ormond Street Hospital and his metabolic team and things appear to be moving in the right direction. Now we just need to get the appropriate appointments through to get Owen the right care.
Thank you to everyone who sent birthday cards to Olivia, they truly mean a lot. She is feeling low at the moment, and the cards did make her feel special.
Thank you Dottie for your lovely card. Also a huge thank you to Penny, Mark, Becky, Owain Murphy, Skye- Jane, Lyn, Maria & Michael, Milly, Fly & Moss for Olivia’s beautiful cards, they truly mean a lot.
Also thank you Caitlin for Olivia’s lovely card and Shopkins stickers and Shopkins surprises, they are fabulous.
Also thank you Bev for both cards for Olivia and her good dinosaur gifts and thank you for her clay that arrived today, she loves it so much.
Again thank you Dottie for your awesome splash post card and your newsletter.
It looks like Owen and Olivia’s favourite dogs had a blast at Dog Club.
Thank you Annette for Owen’s card.
Owen is enjoying the sunshine but he is getting a bit hot lately.
Thank you to the sender of both cards from Singapore, they did make me smile.
Thank you Skye for Owen and Olivia’s postcard with the Die cut from China, it sounds like you had a great time.
Thank you Bev for both books with audio CDs for Owen, they are fantastic. Owen has listened to mustard custard so many times, he loves it.
He will enjoy the pirate one that arrived today, too.
Thank you Milly, Fly and Moss for Owen and Olivia’s card, it sounds like you had so much fun with your new friends.
Thank you Hilary for Owen’s pirate sticker book and postcard, they are great. Olivia has had fun helping Owen with it.
Hi Kate, Rowan and Xander, I hope all is well with you all, I hope you had a great time at the cinema. Olivia went to see Finding Dory for her birthday treat.
Thank you Jasmine for Owen’s fabulous card from Singapore. Owen likes Thor too.
Thank you so much Toni, Karen, Connor and Snoopy for my England card.
I hope Connor loves his new cat smudge.
Thank you so much Jacob and Hallie for Owen’s lovely card and light up tambourine, they are awesome.
Hi Sarah, thank you so much for Olivia’s loom band set. She has made a few bracelets already.
Thank you so much Cheryl for Owen’s fabulous monthly project. Owen’s picture bunting is awesome, we love the sun catcher too, all the gifts are lovely, thank you again. Also thank you for your postcard, looks like you had fun at London Zoo.
Thank you to the Extra Smiles team, the sun catcher is fabulous and looks great.
Also thank you so much for the kite. Olivia is so looking forward to going out to use it.Again thank you to all, you are all truly amazing and you do make us smile.
Update 8th July 2016
A huge thank you for all our gifts this month. Maria: Olivia loved her package so much she takes her notebooks to school too. The rubbers, she absolutely loves them, the lanyard, everything they are all fabulous. Thank you so much Caitlin for Olivia’s wonderful project she loves them too. The heart you made is beautiful and is hanging in her bedroom. She still loves that outfit from last month. Also thank you for Owens postcard from New York, it is a place we would love to go too. Thank you Dottie for our playground postcard and strawberry picking newsletter, as always they do make us smile. Thank you Orla for Owens minion card and Minion zip pull and minion toy, they are great. Thank you Emily for Owens robot post card, we don’t have any pets, oh wow 3 dogs I bet they are so much fun. Thank you so much Jenny for Owen and Olivia’s stickers and play clay, Olivia loves that stuff, she makes people out of it. Olivia loves her jokes too. Owen likes marvel films. Thank you Ann for both Owen and Olivia’s card, Owens does look like a cheeky monkey. Thank you so much Cheryl for Owens monthly project, the sun catcher is beautiful, scooby has been watched 3 times already. The books are great too. Thank you to the wonderful extra smiles team, your star sun catcher did make me smile, we love it. Thank you Kate, Xander and Rowan for Owens awesome finding Dory card it is fab. We can’t wait to watch it.
I would like to thank you all for being amazing, supportive and you help us forget just for a short while, we haven’t had the best start in 2016 but you all help us keep strong.
Update 11th June 2016
Owen hasn’t been too bad this month, although his twitching episodes and epilepsy have returned. A switch of medication has caused the twitching. We have just recently had it confirmed that Owen has chronic dislocation on both elbows, it is the bone called the radial, the inner arm from your thumb.
Olivia is doing great. She is now officially a brownie and has her brownie badges for her promise brownie law.
Thank you Caitlin for Olivia’s by the sea project they are fab, she loves her outfit. Thank you Tracy for Olivia’s beautiful crochet card it is perfect. Thank you Nadine for both Owen and Olivia’s card they are perfect. Dottie your news letter is awesome and we have just received your postcard, you do have so much fun. Thank you Hotaro the magical fox for Owens card. Thank you Kate, Xander and Rowan for your card and your letter on the cath kidston paper, we love cath stuff. Oh wow riding for the disabled sounds so much fun, I went on a horse once when I was much smaller. We went butlins in the school holidays as the weather wasn’t brilliant we came home. Thank you Bethany for my cool monthly project of spots and stripes, the gifts are perfect
Update 12th May 2016
This month has been a mixed bag of happiness. Hayfever kicking in, then we were in hospital for 2 weeks for respiratory review that went in a horrible direction and led to conversations we didn’t want to hear. We are appealing and awaiting a second opinion.
It is all too complicated to compile into a Pal update, but some parts are on Owen’s fund page. I would like to thank everyone involved in the butterfly garden. We are still to buy our caterpillars, which we will hopefully do in the coming weeks.
Jenny, the parcel you sent was just amazing. Wow and wow, what a lovely international parcel – it is amazing – and thank you for the get well card. Thank you to Kanil, Jorge and Gareth (UK unions students) for my card, it is fab. Thank you Dottie for both Owen and Olivia’s card and newsletters. Your adventures are just amazing, as always. RAF, oh wow, how awesome. Thank you Claire for my letter and Thomas the tank engine books. They are great, thank you, again. Thank you Lyn for my lovely Apple cards, they are lovely. Thank you for my Peter Rabbit CDs, Leanne, and email with the CD, too. The stories are great. Thank you Kate, Xander and Rowan for my postcard from Centre Parcs. I hope you all had a wonderful week there. I have heard wonderful things about Centre Parcs. Thank you Marty for my card too, it is lovely. Thank you Owain for my hippopotamus post card. It did cheer us up, thank you. Thank you Ann for my Spider-Man card, it is awesome. Thank you Bev for both Owen and Olivia’s card and finger painting book, and Owens awesome pirate book. It is a huge hit, we love all the hidden compartments in it, too. It has been read to Owen 5 times already. Thank you Debbie for Owen and Olivia’s card with stickers and a colouring page, they are fabulous. Thank you Dawn and Sky for the Disney projector, cards and the New Zealand animal, which Olivia loves. Thank you for all your support over the last few weeks, you are all truly wonderful people. Thank you so much Caitlin. Olivia loves her fabrics and scrapbook, they are are fab, and also thank you for my little gift, too, it means a lot.
Update 3rd March 2016
Owen has had a great month. We have had a few seizures, but it is manageable. Owen has been enjoying his music therapy and is playing the keyboard with the slightest touch. He is so vocal and happy again, too.
I would love to say thank you to everyone who has sent gifts for us all.
The crocheted blanket is so beautiful and is used daily. The interactive bird is just amazing and Owen loves it so much. He cuddles his duck/swan, too, he loves the texture of it. We absolutely loved the balloons, too. Thank you so much much Hayley for all these gifts, they truly mean so much and are very much appreciated. Thank you so much Merlinda for all your wonderful cards and gifts that were in the extra smiles box for Owen. The die card is absolutely beautiful, I love it, the valentines card it lovely, too. I accidentally opened the Easter card, too, that was in the box. All the handmade cards you made are beautiful, and thank you for all the Minion jokes, puzzles and goggles, too. Thank you to the people at the university for Owen’s card, too, it is fabulous. Ann, your wild thing card is just amazing, I love it so much. Thank you Dottie for your Valentines card and letters. We love your skiing note, it looks like you had a fabulous time in the snow. Thank you, also, for our note with our friends featured in it, too. It always makes us smile to see Dottie and friends. Hi Bev, thank you so much for both Owen and Olivia’s Valentines card. And the books are fabulous, Olivia’s book is just perfect, she has read it at reading time at school. Hi Milly, Fly and Moss, thank you so much for Olivia’s card and Facebook post with the basketball. It is always lovely to hear about all your adventures. Thank you Caitlin for Olivia’s monthly project, the books are great, she has taken then to school to show her friends and she reads them at learning time. She takes all her reading books to school to show her friends and tells them about her Pals. Her notepads are perfect, she goes through so many notepads, etc. as she loves drawing and playing school. Her activity books are great, too. Thank you so much to the extra smiles team for all our boxes of gifts, and the balloon was just fabulous. Owen loves them balloons so much and he gets so much enjoyment out of them. We are still to make his jiggle stick from the box. All our gifts are wonderful and perfect. Thank you Abigail for your lovely letter for Olivia. I hope your parents evening went ok. Thank you Skye for always being there on Facebook messenger, it is lovely you always ask how we all are. It truly means a lot.
I would like to apologise for not posting everything in Owens fund menkes awareness page, we have been extremely busy finishing off our renovations, we are finally finished with it now. I would like to thank you all for your generous gifts, you are all very lovely wonderful people and you put massive smiles on our faces.
Update 6th February 2016
Owen has had a great month. Not many seizures which is fabulous. He had been so vocal which is just great to see. After being told he had a faulty spark in his heart, he had a cardiology appointment and it turns out his heart is actually very strong. Olivia has become interested in joining Brownies and hopefully she will be able to get a place after the Easter holidays. She currently plays basketball and is playing in a tournament tomorrow.
Thank you so much for the Candy Chaos box. They are always great. The dehydrated foods are just fantastic. We had so much fun doing them, the burger and chips actually taste like burger and chips. Thank you Skye for both Owen and Olivia’s book and bracelet, they are great. Thank you Dottie for our newsletter, cooking is very hot work. Thank you to everyone in China who sent Owen the Manchester United post, it was fabulous. It made me smile, and Owen, too. Thank you Abigail for your cute picture and letter. Your post did make me tearful and it was lovely to see post from a year old, it pulled on my heart strings. Thank you Sophie for Owen’s stickers, too, they are great. Thank you Kate, Xander and Rowan for Owen’s postcard. Thank you to everyone at the university for Owen’s superhero card, it was amazing. And thank you Maria and Michael for Olivia’s letter. Unfortunately we didn’t get any snow before Christmas, but she received a lot of presents.
Thank you again for everything, Post Pals. You are all amazing.
I will send thank you letters to you all. We are just in the process of major renovations in the house. When we have got everything back to normal then we will send you some post. Also, Olivia has been searching for her pal Hannah from last year. She has a letter for her but I lost everyone’s addresses as they were all on my phone and got deleted by accident. I believe Mrs Lambert is her mum. Could you please confirm if this is correct so Olivia can send her this letter and drawing?
Update 22nd January 2016
Hi everyone, I would like to thanks to Skye, Bev, Caitlin, Dottie, Moss and Candy Chaos for your post this month.
This has been a horrible month for Owen. As you all know he had a horrible 6 months with his epilepsy, so his medication was changed again only for this last anticonvulsant to cause a whole lot of issues. He had a very bad allergic reaction and we ended up being admitted into hospital. Following a blood transfusion, and due to the reaction which his skin was burnt from the toxin, he also contracted strep and also a urine infection due to his white and red blood cells reduced because of this medication.
Following this hospital admission, we have come to learn Owen has an issue with his heart and we are now under the cardiologist.
Over the past few days we have seen Owen being himself again – laughing and smiling.
When we received the Candy Chaos box he was having a good old rummage. It isn’t something he has done before which was fantastic to see.
We have just currently decorated his bedroom red and blue, and he absolutely loves it. He didn’t sleep much at all in pure excitement.
Olivia absolutely loved her treats from Caitlin, they were fantastic. she loves Leo the lion, and the hot chocolate and marshmallows were just awesome.
Skye, I loved the handmade windchime, thank you so much.
Update 3rd January 2016
Thank you so much to each and every one of you sweet Elves for making our Christmas special. Olivia absolutely loves all her gifts, especially the huge teddy from Florence and friends, the cat Beany Boo was a great hit too. Owen’s gifts are fabulous too; the box of various Sensory lights and tackle items are just fabulous. The Mickey Christmas DVD has been watched several times. All the books both Owen and Olivia got are just fabulous. Olivia already coloured her owl cushion on Christmas Eve. We loved seeing all the glitter on the lawn from all the Reindeer food and a wish was made. The wish was for a real horse, lucky enough Olivia wasn’t too disappointed by the wish not coming true. The gifts from Mrs B’spoke gifts are just beautiful and will be treasured forever. Oh, and to the sender of Olivia’s frozen baubles, they are beautiful and went on our Disney theme tree just beautifully.
Thank you to everyone for your letters, cards and notes. It is so lovely to be a part of such a wonderful charity.
Also, thank you to all of our Post Pal friends that contact us via Facebook, either on my own personal Facebook or “Owen’s fund menkes awareness”. Your conversations, updates and generally checking how we are, it means so much, especially as Owen has had yet another horrid month. This time with his new medication to treat his epilepsy. He got a serious skin allergy from it. If we didn’t identify it when we did then things could have proved fatal. Owen is being a trooper and battling through it all.
He absolutely loved his presents, especially the funky Beany Boo monster that talks. It did make him laugh. Thank you, again, for your continued support, and thank you so much for being you. You are all wonderful people.
Update 1st December 2015
Owen has had a much better month, although his epilepsy is still problematic so we are due to change his medication again for the third time, so third time lucky, I suppose. He has really enjoyed the books that have been sent, especially the ‘I wish I had a pirate suit’ and ‘Pizza For Pirates’. Despite the change in medications again he is coping well and is more social. The Candy Chaos box was just amazing, the popcorn was sublime. Thank you to all involved with this lovely treat. The popping candy was fabulous for Owen although he doesn’t eat he does have tastes. He finds the popping amusing. The monthly projects from Florence and friends are amazing. Olivia absolutely loves her cat costume, she wore it on Halloween and to a fancy dress party. I would like to take this opportunity, again, to thank you all for your wonderful post. It all means a lot and the smiles from us all are just immense. Thank you again for your continued support.
Update 15th October 2015
Owen has had a horrid time with his epilepsy, which has been variable for the past year. He had his medication changed in July, only for them to fail him and he went on yet another new med in September. Now we are in October hopefully we are starting to get Owen back.
Hannah, Olivia has often spoken about you being her Pal. Please don’t feel we are ignoring you. Owen really has been in a bad place which has been physically and emotional straining on my part. I know we haven’t heard from you in a while. Again, please don’t feel Olivia doesn’t want to be your Pal. It really has been a real tough six months for us. I have changed my phone so all addresses that were on there have also gone, so anyone wanting post from Owen and Olivia please forward me your address and we will send something.
I would like to say a massive thank you to:
Florence and friends, you are truly wonderful people. Your monthly projects are just amazing and I appreciate the things you have sent Owen, too.The last project was fabulous and perfect for our holiday. Owen’s birthday present is fab, now his epilepsy is getting there he is having more enjoyment with his Olaf. Dottie the Dalmatian and Milly, Fly and Moss, your adventures have kept us all going and it has been fabulous today see all your adventures. It was lovely to see your litter mates on your news letter, always such a pleasure. The glow sticks and the little sticky sin go’s the sticky things actually got stuck on the ceiling and left a face print. Oops! Owen’s birthday cards were fab, too. A massive thank you to Toni, Karen and Conner for your fabulous birthday card. Love, love, love it. I hope you feel better soon, Conner. Skye, again thank you for your continued support via Facebook. Olivia loves her Frozen puzzle, animal cards and postcard. Your friendship means a lot.Thank you Tarya for Olivia’s wonderful postcard from Finland. I hope you had a wonderful birthday party. Thank you Ana for Olivia’s beautiful card, and thank you for Owen’s pirate card, it is fab. Thank you to Owain for both Owen and Olivia’s card and little gift, we loved them. Thank you Helen from Cornwall for Owen’s pirate card, it is fabulous. You are very good at drawing, the pirate is amazing. Thank you Hilary and Jen for Owen’s meerkat card, it is lovely. Caitlin and Gracie the dog, the card you made for Owen was just fabulous, it did actually make me cry. I love it. Thank you Chris for Owen’s card, it is lovely. Thank you Mark for Owen’s colourful 9th birthday card, it is fab. Thank you Marty for Owen’s card, too, it is great. Thank you Lyn for Owen’s card it was amazing. Thank you to Bev for both Owen and Olivia’s card and for Owen’s DVD and Olivia’s princess gifts. They’re fab. We also had a lovely letter and picture made by an Albanian girl, and the friendship bracelet is beautiful. The letter is lovely, thank you so much. Extra Smiles team, the glasses are fab and, also, thank you so much for my notepad too. I do get overwhelmed when I receive gifts . A huge thank you. Thank you Jet, Jonathan and Kenny for Owen’s activity book, it is great, and thank you for my letter too.
Sincere apologies if I haven’t posted pictures with both Owen and Olivia with their post.
Update 6th September 2015
Thank you this month to Post Pals, Marty Lonso, Karen, Toni, Connor & Snoopy, Milly & Fly, Kristie, Florence and friends, Tashja & Jasmine, Michelle, Sophie, Dottie, Hillary & Jeni, Emilko, Lyn and Bev, all for Owen and Olivia’s wonderful post and gifts. To Jasmine, pugs are Olivia’s favourite dog. Milly and Fly, that note pad you sent was pawsome, I thought it was you on the front cover! Dottie, Millie & Fly, we always love to hear about your adventures as they are fabulous. Thank you to everyone who sent Olivia birthday cards and presents too as they are all wonderful. Thank you to everyone who has sent Owen birthday cards and little gifts too. We haven’t opened them yet but I will post them all on his Facebook page next week, Owen’s Fund Menkes Awareness. I do apologise if I have missed anyone. Florence and friends, your monthly projects are superb. Olivia’s birthday box was just beautiful and she actually shed a tear.
Owen’s seizures have come back again so there is not much to report really, but we have little smiles come though all the sezuires and spams.
Thank you all for your continued support and thank you Skye for always checking how we are on Facebook as it truly means a lot. You are all amazing and wonderful people.
Update 3rd August 2015
Owen has been out of sorts for sometime now. We have had days where we see smiles though which is good.
Owen’s epilepsy spiralled out of control very quickly and he had a quick change of medication which we are still reducing. We have visited Owen’s many hospitals in the past month, the last one being today at Great Ormond Street. We left there feeling very happy, content and hopeful, as we’re moving in the right direction with Owen’s health now, with his epilepsy currently under control.
Thank you so much to everyone that has sent Owen and Olivia post and gifts – you are truly amazing people.
Thanks again to Florence and friends, your monthly project boxes are just outstanding and Owen’s wall board is fabulous. Skye, thank you again for your continued support via Facebook – although I am never good with words, your support means so much. The vegemite Cadbury bar was actually quite nice when stored in the fridge. Thanks go to Bev too as we had so much fun with Owen’s bath popping fizz stuff. Such a fabulous gift. Thank you Toni, Karen and Connor, for Owen’s cars book. It was so lovely to see Olivia read it to him. I’d also like to say a huge thank you for the quilt that was sent for Owen this month as it is perfect. Claire and Michelle sent lovely cards this month to Owen, as did Mark to Olivia. We got to share in Dottie’s adventures, as well as Milly and Fly’s sending a ‘pawsome’ card from France. Olivia received some brilliant gifts too this month and says thank you. She also wants Hannah to know she hasn’t forgotten to write and will soon.
Update 4th July 2015
Owen hasn’t been too bad this last month – his seizures have been unpredictable with this hot weather, but he is doing okay.
I would like to say a massive thank you to everyone at We Love Paper Cuts, the frames you sent us all were just amazing and overwhelmed was truly an understatement. You guys are just amazing and there were many happy tears!
Thank you so much to Florence and friends for Olivia’s (always amazing) monthly projects and I can’t express how grateful I am that you sent Owen a gift pack too. The books are just fab and Owen loves them, so we had plenty of chuckles with the books. I was actually quite tearful with his gift. Florence and friends, you are just fabulous people and Olivia loves receiving your projects.
Thank you Toni and Connor for Owen’s Bug’s Life DVD, he has watched it a good few times. It is double sided too and I think it has different endings. Again, you are also fab and sending Connor big hugs.
Dottie, we absolutely love your adventures and I must say that your colouring skills are just fabulous.
Hi Hannah, thank you for your letters and cards. Sorry we haven’t written back yet, but I promise Olivia will sent to a letter really soon.
Thank you Anl for both Owen and Olivia’s handmade cards, they are fantastic.
Thank you Kat for your lovely postcard from south Cornwall. Hopefully one day we will take Owen to Cornwall so he can have a taste of Cornish icecream.
Thank you Skye for your regular contact via Facebook, it truly means a lot.
Again, I would just like to say thank you to all you amazing people as you really make us smile.
If you would like us to reply to you could you please forward your address/email so we can send a thank you.
Update 31st May 2015
Owen’s health is still very much up and down. We did have a good few weeks of a happy seizure free boy, but we are back to increased seizures again.
Thank you so much Millie and Fly for your pawsome card and letter. Always such a pleasure to hear about your adventures. Notes from Dottie always make us smile. You really do some awesome stuff. Thank you Becky Rideout for Owen’s card and ice-cream bubbles, the bubbles are just fab. Olivia is always blowing them for Owen. We love minions, we can’t wait for the movie to come out. Thank you to the Dreter family for Owen’s card, the teddies card is cute. Hi Hannah, Olivia just received your card this morning and I am so pleased you received Olivia’s letter. Thank you Florence and friends for your monthly project which is always fabulous. Olivia absolutely loves it all. The bee and wind chime are on Owen and Olivia’s cabin and they look awesome. I simply can’t thank you all enough.
Update 1st May 2015
Thank you so much for both Owen and Olivia’s gifts this month. Florence and friends, your monthly projects are wonderful and very much appreciated. Olivia has become quite taken with bath bombs. We are still enjoying the Beatrix Potter book and flopsy bunny from the last monthly project.
The senses box this month was just amazing. I know I always mention this but I would like to thank Skye for being such a fantastic support on my personal Facebook, your handmade sun catcher is just beautiful and we love the funky balloons you send too. The sound cards are fab. I haven’t really been around much on my personal Facebook as Owen’s health has been so unpredictable, but I have managed to get Owen back on track and back to being his happy verbal self. Milly and fly, we do follow your Facebook and your letters etc. are always fabulous and it really does make us all smile. Thank you also to Hannah for being Olivia’s Post Pal, as Owen’s health has stabilised I can help her write you a letter, I can only apologise it has taken so long. Lindsay, thank you so much for both Owen and Olivia’s card, the jokes are just brilliant. Thank you Toni and Connor for Owen’s fabulous gifts, the lip butter smells lush, Owen was really enjoying the smell and taste today, he also loves his spot the dog and he wouldn’t let him go.
Thank you all for everything, it truly means a lot. Many thanks.
Update 4th April 2015
Owen’s health is been so up and down at the moment, but now we are in spring the winter bugs will leave him alone so he can be the Mr Chuckles that he is. We have just started Owen on a blenderized diet and we are just taking things slowly with it as we don’t know what Owen’s weight will do (either lose or gain too much weight).
I would like say a huge thank you to everyone who has sent cards and posts cards. I have tried to upload as much as I can on Owen’s Fund Menkes Awareness page. It truly means a lot to see Owen and Olivia smile when they receive post.
I would like to take this opportunity to say thank you to everyone who has written small notes to Owen and a huge thank you to Hannah for wanting to be Olivia’s pen pal, she is truly over the moon that she has a friend called Hannah and she tells all her friends that she has you as a pen pal. Owen was been so unpredictable with his health lately which has delayed Olivia writing back.
Thank you so much to everyone who sent gifts to both Owen and Olivia. A huge huge thank you to the extra smiles team at Post Pals, I can’t tell you how much the bath bombs were appreciated. Olivia said they really do make her feel like a princess and they were just so beautiful. Owen’s colour fizz are awesome too. And thank you for the awesome Easter egg too, we have just started Owen on a blenderized diet so a nice chocolate smoothie will be made with it and Olivia will also enjoy some. Florence and friends, we are so overwhelmed by that beautiful box you make for Olivia. The box itself was fantastic and thank you for all the gifts inside too, she absolutely loves everything. Thank you Toni, Karen and Conner, for Owen’s superworm book, we love Julia Donaldson books. Superworm is a fantastic book and Owen absolutely loves it. Thank you so much everyone.
I would like to say a huge thank you to everyone for your post, letters etc. I would like to say thank you to Bev too for sending me a card just to make me smile, it really did make me smile and it is nice to know you see Owen on his Facebook page. And a huge thank you to Skye for always checking on Owen, Olivia and myself. It is always a pleasure to hear from you. A big thank you to Milly and Fly as well as you always send Owen well wishes on Owen’s fund.
Update 4th March 2015
Thank you so much to everyone who sent gifts to both Owen and Olivia. The Minion top is awesome and Olivia’s box of sunshine was just fantastic. All the gifts are just wonderful. Thank you for absolutely everything.
I would like to take this opportunity to apologise if I haven’t posted much with cards, gifts etc. We have all been a bit up and down with winter bugs. Owen has been very up and down lately but he is managing to stay out of hospital. Thank you again, you are all such wonderful people.
Update 3rd Febrary 2015
I would like to say a huge thank you to everyone at Post Pals. The balloons that were sent are fab! Thank you for the wonderful cards, books and stickers too as we really do enjoy them.
Update 11th January 2015
Owen is going through a really good spell and the moment which is so great to see.
A huge thank you to all you amazing, wonderful and beautiful people for making us all feel really special during the festive season.
Thank you so much to all the wonderful elves, reindeer and Mrs Claus for the cards and letters from the North Pole. Olivia firmly believed all post was delivered via the North Pole Express and it was magical.
We have had a very happy and healthy month, normally Christmas is spent with Owen being poorly or just simply not himself but this year he was absolutely loving it. Owen absolutely loved listening to the Roald Dahl The Twits audiobook which sent him in to big chuckles and it was great to see. I was so emotional when we opened that and I can’t thank you enough. We also had fun making gingerbread, the house smelt wonderful and festive.
You all made us feel really special this Christmas, thank you all so much for everything.
Update 29th November 2014
Owen has been very up and down the past few months with bad seizures, sickness, more viruses, urine infection and now tonsillitis. This month has really took its toll on him. However, it was great to hear from school that Owen is using the eye gaze machine to make selective choices, which he is doing remarkably well with when he is in good health. He is making a lot of finger and pointing movements for choices too.
Thank you Milly and Fly for your postcards and letters, we like seeing your adventures, especially Olivia as she is dog mad. Thank you to April and the voluntary actia centre for your beautiful Christmas card. Your words did make me cry. Thank you Bailey and Lola for your Christmas cards, one arrived today for Olivia and Owen’s arrived yesterday. You are very cute. Thank you Skye for your little cards and notes for both Owen and Olivia. Thank you Susan Martin for Owen’s hugs card wishing him to get well soon, his card is lovely. Thank you Melissa for Olivia’s beautiful blingy card, we both absolutely love it. Thank you Dottie for your wonderful news letter, the steam train looked so much fun. Thank you Prancer for your Christmas letter that arrived with Owen and Olivia’s parcel yesterday. Thank you so much to Skye for all your wonderful gifts, we are having so much fun with the card reader. Susan Martin, I simply can’t thank you and Melissa enough with your awesome Mr men books for Owen and arts and crafts packs for Olivia. Olivia said you are amazing Melissa, amazing and thoughtful were her words. Toni, Connor, Karen and Snoopy, a big thanks as Owen absolutely loves the Nemo. A huge thank you for the parcel that we received yesterday from Prancer aka Kim Lawrence, we can’t wait to start the advent calendar.
I would like this opportunity to say thank you to Skye for her constant contact via Facebook to see how Owen and Olivia are doing, especially Owen as he has been poorly on and off now since the end of August. Thank you to Milly and Fly for checking on Owen on his Facebook page, Owen’s fund menkes awareness, please feel free to continue to post on his wall as all Facebook posts and messages are read to him. Again, I simply can’t thank Susan Martin enough, if you see what she does with the books she gives to Owen it just amazing. She makes his books all sensory, touch and feel, and sparkling – we absolutely love them. Owen’s face – well, there are just no words really – his face says it all, he loves them. Melissa always jazzes up Olivia’s package, it is always very bling. We absolutely love it. Thank you Toni and Karen, you guys are also amazing.
Update 29th October 2014
I simply can’t thank everyone at Post Pals enough. We are still having issues with Owen and his seizures and his post makes him smile. Thank you to everyone for the wonderful cards, we absolutely love them and a huge thank you for all Owen and Olivia’s gifts. The Mr Men books are always amazing from Susan Martin. Owen received a dvd from Toni, Connor and Karen, and it has been in his DVD player and watched ten times already. Olivia received the most beautiful tiara and we adore it, so a massive thank you to the sender as it is beautiful.
Update 9th October 2014
I simply can’t thank everyone at Post Pals enough. We have had a tough month with Owen and his seizures so I haven’t posted much regarding Owen and his post. I like to post happy pictures of Owen with his mail on Facebook.
Thank you to everyone who sent Owen birthday cards and thank you for the cards and post cards for both Owen and Olivia. They all put a smile on all of our faces. A huge thank you for all Owen’s birthday presents and for the gifts for both Owen and Olivia, they are truly amazing.
Update 30th August 2014
Owen has had a busy month with various tests and we also had our annual appointment at Great Ormond Street Hospital. He was becoming so lethargic and sparking seizures that we thought it was time he needed a transfusion. Test showed Owen’s potassium levels are low and his clotting is also abnormal. Despite then having potassium supplements his repeats tests showed his potassium was still low and his clotting levels were worse than the previous readings. However he is now feeling better and is ready to return to school next week.
I would like to say thank you to you all at Post Pals. Everything you do it truly amazing. The Mr Men books we received from Susan Martin are just amazing – they even make me smile, let alone Owen. The indoor beach was superb. We have had plenty of fun with that. All the gifts are amazing. Thank you so much for Owen’s letters and cards too as we really enjoy hearing from you. Olivia really enjoys her post too, especially the pick up sticks, stickers and tattoos. A huge thank you for her birthday cards and gifts too.
Update 22nd July 2014
Thank you so much for the cards and postcards for Owen and Olivia. They really do enjoy getting post from you all. Thank you for all for your wonderful letters too as we take great pleasure in reading them. Again, a huge thank you for all the gifts. The Mr Men books are brilliant and Owen adored his balloon.