C/O 84 Beresford Road
Lowestoft
Suffolk
NR32 2NG
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Seren S's Parents/Guardians

Becky and Adrian

Seren S's Siblings

Pal Dylan

Seren S's Interests

Playing with dolls, drawing, making things, watching films, riding her bike, spending time with family, Mickey and Minnie Mouse, Polly Pocket, Bratz. She also loves cats, The Chronicles of Narnia, Barbie, Playstation II games and going to Rainbows and Sunday School.

Seren S's Favourite Colour

Purple

Is Seren S able to read?

Yes

Is Seren S able to use hands?

Yes

Is Seren S visually/hearing impaired?

No

Does Seren S suffer from any developmental delay?

No

Story written 2007

Seren was suspected to have Cystic Fibrosis from 22 weeks of pregnancy, as her bowel was echogenic on ultrasounds. At birth, a blood sample was taken to test her for Cystic Fibrosis genes and she was found to have CF. Her treatment started the following day at the hospital. She was started on prophylactic antibiotics, Flucloxacillin, Creon capsules to digest her milk for her, and daily supplements of a multivitamin and extra Vitamin E. At four weeks old she began a thrice daily regime of chest physiotherapy to clear the sticky mucus from her lungs. At sixteen days old, I had to stop breastfeeding and start giving Seren SMA Gold formula, as she was drastically losing weight. She took well to this and did start to gain weight, but by 7 weeks old, she had dropped from the 50th centile at birth, to the 9th centile, so she had to start SMA High Energy, which worked wonders. In her first year she had a lot of throat infections which made her poorly and then at 13 months, she grew her first bug on a cough swab, Haemophilus Influenzae, which she received a course of extra antibiotics for.

She then had a much better second year, and stayed healthy with good weight gain until around her second birthday, when we had to wean her off the SMA High Energy and onto cow's milk. This caused her weight to drop and we struggled to get her weight up. Then at 23 months, she grew a bug called Pseudomonas and had to start some very strong oral antibiotics which made her ill, and a nebulised antibiotic as well. The treatment worked and she cleared the bug well and hasn't grown another bug on cough swabs since.

She finally, for the first time in her life, discovered an appetite in autumn of 2004. She finally started gaining weight nicely and since then, her weight has usually been good. We have to work hard though to keep it at an acceptable level, frying as much of her food as we can, making sure she eats lots of high fat foods such as crisps and chocolate, and trying to get her to drink plenty of milk.

From Christmas 2004 to April 2006, her health was very good. Her CF was very well controlled and apart from the occasional constipation, she had no real problems. Then in April she started full time school and her asthma, which had previously been very mild, needing inhalers only once a month or so, suddenly went haywire. Through the summer and autumn, Seren started needing inhalers more and more frequently and so in October, she was started on a Becotide inhaler in addition to her Ventolin. This still wasn't enough and so the Becotide dose was doubled last week and she has been struggling to come to terms with having asthma as well as Cystic Fibrosis and hates her constant cough.

At the moment, her medications are as follows: Ventolin inhaler, 4 to 6 puffs as necessary. Becotide inhaler, 4 puffs twice a day. Fish oil capsules, 2 per day. Vitamin capsules, 1 per day. Vitamin E liquid, 1 ml per day. Flucloxacillin capsules, 2 per day, Creon capsules, 3 with snacks, 4 with meals, Nasonex spray, 1 puff in each nostril once a day. At the moment, on an average day, Seren takes 22 tablets and has at least 8 puffs of inhalers, hence her struggle to adjust.

Update 7th May 2008

Seren's had quite a good month. We went to a local fair on 13th April, and she had great fun on a large inflatable slide, the bouncy castle, and even went on a trampoline with a harness!

Then from 18th to 20th April, Seren came with me on the train to visit my Dad in Wales. It was a surprise trip, and he had no idea she was coming with us until she walked into the room he was in, and he was so pleased! So she had fun doing jigsaws with my Dad and she walked their dog twice with my Mum and went to visit my Nan in her nursing home. She was really good on the trains too!

The 21st April was Seren's Parents Evening at school and a few concerns were raised. She is still struggling with her literacy. Verbally, she's very advanced for her age and very imaginative, but she struggles with writing her letters the right way round and reading and spelling. She's still young yet, but she's behind a lot of her peers.

She is in an extra reading group at school to boost her confidence and she's just started an ELC to boost her literacy skills every day, but her teacher has recommended that if she is still struggling by September, then she should start the ball rolling for getting tested for dyslexia, as she has a lot of symptoms of it. 

Seren has enjoyed going to a friend's birthday party this month and also going on a school trip to Bewilderwood in Norfolk, which was her first proper school trip. She had her school photo done this month as well, so we're looking forward to seeing how that has turned out!

She's also just getting over a heavy cold, but it didn't set her asthma off too much and she's coped well with it.

Seren has more things to look forward to next month, as she has another birthday party to go to, and then the following week, she is going to the local wildlife park with her Rainbows group, and then sleeping at her grandparents the same night!

Thank you to Helen F for the beautiful card, it was gorgeous. Thank you to Rachel and Poppy the Snail for the note card, Seren said "Oooh, hello Poppy the Snail! I had a seagull eat my lunch once!" Thank you to Rachel Cridge, Seren loved the pictures of Mickey and Minnie. Thank you to Fiona for the spider card, the spider rhyme made Seren giggle, as I pretended my hand was a spider as I read it to her. Thank you to Jenn for the card, in answer to the question, we did have a little bit of snow. Thank you to the Johnson family for the postcard, Seren said "Wow! That's a lot of pets!" Thank you to Helen T for the card. Thank you to Kate Dee for the card, Seren thinks the dwarfs are Happy and Bashful. Thank you to Jenn for the postcard. Thank you to Fiona for the Winnie the Pooh card, and the duck card, Seren loved the duck in the rubber ring, he made her laugh, and she loved the facts inside.

Thank you to Helen F for the stickers. Thank you to Rachel Cridge for the stickers, Seren said she'd use the stickers to do a food chart for her toy cat (Kitty) as he's not eating very well at the moment! Thank you to Helen T for the lovely sticker book, Seren said "Oooh, a sticker book! How great!" Thank you to Kate Dee for the parcel, Seren said "Wow! I like that! Look at all those stickers! I can't believe it! I really like that!" Thank you to Kate for the lovely pink jewelled clip, she wanted it put in straight away!

Update 12th April 2008

Seren has had a pretty good month! She enjoyed dressing up as the Little Mermaid for World Book Day at school on 6th March and then on 10th March we went to see the CF Specialist from Cambridge at Norwich.

She hadn't grown or put on much weight recently, and she's down to the 30th centile on the BMI growth charts (the goal is 50th centile or over) so we need to feed her up a bit at the moment. Her SATS (oxygen levels in her blood) were fine though, and her lung function was her highest ever, at 99%! The specialist told her that’s a 'gold star score'!

She generally had a good report, except that he said that if the Seretide and Ventolin become insufficient to treat her asthma problems, then we can start her on Singulair (Montelukast) like Dylan. Also, he said that her nose is still very inflamed and she doesn't have good air entry into her right nostril, so she has to start the Nasonex/Flixonase spray again which she's not too happy about, but as we told her, it should help her to breathe more easily. It worked last time, but I think this time she'll need to be on it much longer.

We went to Wales to visit my family for Easter and Seren really enjoyed herself there. She had a bit of a cold and cough when we first got there so she couldn't visit my Dad in hospital at first, because he had started his Chemotherapy the day before, so couldn't be around anyone with any viruses. On Easter Sunday, she had quite a bad asthma attack and had a nasty cough for the rest of the day, so she couldn't go to see him then either, but Daddy kept up the inhalers all day, and so by Easter Monday her cough had cleared up and she was able to visit my Dad, which he loved. 

She also loved having two Easter egg hunts on Easter day! I did her an indoor hunt for her eggs from us in the morning and then my Mum did her a garden hunt for her eggs from my parents in the afternoon while I was at the hospital with my Dad.

Over the Easter half term Seren enjoyed making some cards to send to some girls on Post Pals and we played lots of board games and went to the soft play place for the afternoon which she really enjoyed. 

On 1st April I cut Seren's hair for her and she now has a jaw length bob, which she really loves, so she's always on the look out for pretty new clips to put in it, as it's too short to tie up now.

When Seren went back to school on 8th April, she was put up to the next level of reading books, which she was REALLY proud of! She started on the white level when she started Year 1 in September and has gradually moved up to the Blue Level and Pink Level, and now the Brown Level! 

Seren is very much looking forward to going back to Rainbows on Monday and then we have a trip to the dentist on Thursday. She has a birthday party to go to at the end of the month, but there aren't any scheduled hospital appointments coming up this month, so fingers crossed it'll be quite a quiet month!

Thank you to Karen (Sami) for the Minnie Mouse card, Seren loves Minnie Mouse and said "Oh Wow!" when she opened it. Thank you to Vickie for the inflatable postcard with the sparkles, Seren loved it! Thank you to Kate Dee for the Little Miss card, Seren said "I think Miss Naughty is trying to scare Miss Sunshine!" Thank you to the girls at Georgie's Fund for the card. Thank you to Kate Ware for the tiger card, Seren loves tigers! Thank you to Anne Gairn for the card. Thank you for the Easter card from Israel, I'm sorry I couldn't read the signature to say thank you properly. Thank you to Julie B, Kate Dee and Jenn for the Easter cards. Thank you to Jenn for the starry card, Seren said "That's so cool! That's so funny! I want to keep it forever!" Thank you to Erin F's grandparents for the Easter card, and to Michael & Maria for their Easter card. Thank you to Julie for the card. Thank you to Kate Dee for the butterfly card, Seren said "That's so pretty!" and Dylan loved it too, he kept saying "Dufferflies" over and over and touching them! Thank you to Martin, Jackie & Jamie for the Easter card, and to the Post Pals team for their Easter card. Thank you to Eloise for the card, and to Sarah for the notecard, Seren's favourite films are the Scooby Doo movies, and she loves walking my Mum's dog when we visit them. Thank you to Anne Gairn and Kate Dee for the postcards. Thank you to Chloe G for the card, Seren said it was very pretty. Thank you to Kate Dee for the card and thank you to Fiona for the card. 

Thank you very much to Anne Gairn for the Littlest Pet Shop rabbit, Seren said "I've always wanted one of them!" Thank you to Karen (Sami) for the notepad, badge and ball. Thank you to the girls at Georgie's Fund for the Make Your Own Sequin Art and the Tinkerbelle cards, Seren said "Oooh, very good!" Thank you to Anne Gairn for the Polly Pocket Kerstie doll and accessories, Seren said "I will enjoy playing with my gift!" Thank you to Julie B for the glitter stencil kit, Seren loved making pictures with it. Thank you to Julie for the play jewellery, she is always wearing it, especially the rings! Thank you to Kate Dee for the lovely poodle and bracelet, Seren said "I love my poodle! What a pretty bracelet!" Thank you to Clare Bray for the beanie cat, Seren adored him! I think he was her favourite Post Pals present ever! She said "I'm going to call him Fuzzy and make him a home, and introduce him to my other cats!" And thank you to Anne Gairn for the stickers to add to her Princess sticker book, and the lovely Ella doll.

Update 5th March 2008

Seren has had quite a good month. She has needed extra inhalers now and then when her asthma's played up, but she has been good for her twice daily chest physiotherapy and in taking all her tablets lately too. I'm sure Post Pals has helped her here! Her appetite has been mostly good, but I don't know if she has put any weight on since her last clinic in January. She's going with her brother Dylan to see the CF Specialist at Norwich on Monday, so hopefully we'll know more then.

She's very worried about her grandfather though, who we call Bampie. It's my Dad, and he was diagnosed with a spinal cord lymphoma on 28th February. We only lost my grandfather to brain cancer last June, and so she's very worried about my Dad. She isn't sleeping properly and is quite unsettled, especially as I traveled to Wales last weekend to be with him and I'll be going again this weekend, so she's having a hard time with missing me as well. We're hoping to all go visit him during the Easter holidays, but if he does have the chance of chemotherapy, I'm concerned about how Seren will cope with seeing her Bampie lose his hair. 

Thank you to Kate Dee for the Cinderella card as Seren loved it, especially the way it was made up of different layers. Thank you to Jenn for the fairies card, she said "Wow! That's a pretty card!" and the joke made her giggle! Thank you to Post Pals for the Easter card, which she hasn't opened yet. Thank you to Maria Carney for the 'Thinking of You' card, she said "Awww, that's so nice!" Thank you to Sarah for the postcard, in answer to your question she said "I do." Thank you to ‘?’ for the Valentines card! Thank you to Anne Gairn for the card. Thank you to Kate Dee for the monkeys card. Thank you to another ‘?’ for another Valentines card, to Jenn for the Valentines card, and to Susanna for her Valentines card too. Thank you to Jade for the letter, which she enjoyed listening to. Thank you to Anne Gairn for the Design a Mirror, Design a Picture Frame and the Polly Pocket and car, she especially loved the car, she said "Oh Wow! I love it!" Thank you to Kate Dee for the Bratz pens and crayon by numbers, she loved it, she did the crayoning all evening and all the next morning, she would have taken it to school with her if she could have! Thank you to Jade for the doll, who she said was "Beautiful!" and the crown hairclips, which she had to put in straight away! Thank you again to Anne Gairn for the painting by numbers pack and the Disney Princess sticker book and stickers. She did the stickers all by herself, and has done a beautiful dolphin picture with her painting by numbers kit!

Update 30th January 2008

Seren hasn't had too bad a month. She has had a few problems with her asthma, but apart from that she's been pretty good. She's been doing well in school as well!

Her dietician is very concerned about her diet though, as her zinc intake is down to 40% of what it should be, her iron is down to 60% and her calcium 80%, so we are trying hard to boost her intake of these foods. It’s tough though, as she's an incredibly picky eater, and just doesn't like many foods that contain these nutrients, so if she's still low on these in another couple of months, we'll have to start her on supplements for them. 

She has CF Clinic on Friday 1st Feb, and I want to bring up her recent hearing problems. She has been saying for the past few months that the tv needs turning up and up, and she finds it difficult to talk quietly lately too – she always seems to be shouting. CFers can be prone to glue ear, and I had it myself as a child (I don't have CF myself, I'm just a carrier, as is Adrian) and I had similar symptoms, so I want to get her ears checked.

Thank you to Denise Workman for the two lovely cards and the prayers and to Kate Dee for the flowery card – Seren said the card was 'beautiful'. Thanks also to Julie Barrett for the card, Seren said that the tiger is her favourite animal and gave the card a cuddle! Thank you also for the book, Seren has enjoyed dressing the dolls! Thank you to Holly Hall for the letter and photo, Seren said Holly is very beautiful and the letter really touched her. Thank you to Anne Gairn for the two letters, Seren has really enjoyed listening to both letters and she said baby Kaitlin is very beautiful. Thank you also for the fluffy star pen and the bead jewellery set you sent. Seren can't wait to play with the beads!

Update 5th January 2008

Seren very much enjoyed the run up to Christmas, as she REALLY loved getting all the cards and parcels from the lovely people who sent them through Post Pals, they made her feel really special, and she really loved getting the letters from the Reindeers. She went to her school Christmas party, and she was Mary in the Church nativity on the 23rd, and then we went to see Father Christmas. 

But then when we got home on the 23rd, she came out in chickenpox, and was very poorly with it. Her temperature kept shooting up as high as 40.3 C and she was horribly itchy, and calamine lotion and anti-histamines didn't really seem to help. Her torso was plastered in spots and they all grouped together and they were really sore as well as itchy. 

So she was really miserable on Christmas Day and Boxing Day, and she was so pale, she looked like a ghost, but opening her presents made her smile a bit. She's now feeling much better, and her scabbed spots are starting to go. 

She looks quite thin though, so we're trying to feed her up a bit, but her appetite isn't too great at the moment. 

Her asthma has been well controlled over Christmas, but the test will be going back to school and starting PE lessons again.

She will be seeing the CF Specialist at Norwich on the 14th January, so we'll have more info then. 

Thank you to Kate W, Despina, Helen T, Post Pals team, Julie, Sue and Alan Barrett, Becki, Laura H, Wend, Jenn, Jon Paul, and Martin, Jackie & Jamie for the Christmas cards they sent. Seren loved opening them! Thank you to the Post Pals team who sent the letters from the Reindeers, Seren LOVED having them read to her, and looked forward to getting them. Thank you to Emma Hoole for the letter and reindeer food. Huge thank you’s to Kate W, Helen T, Wend and an anonymous elf for being Seren's elves. Also thank you’s to Julie Barrett, Louise Woodcock, Chloe G, and Emma Hoole for the Christmas presents they sent, Seren loved them all. She was poorly on Christmas Day, and opening her presents was the only thing that could make her smile.

Update 8th December 2007

Seren had CF Clinic yesterday and her consultant changed her inhaler from 4 puffs of Becotide 50 twice a day, to 2 puffs of Seretide 50 twice a day, as he said having to take 4 puffs twice a day long term would get on her nerves and so his choices were to give her the 100 strength of Becotide or switch her to the stronger Seretide. He chose the Seretide, as apparently Becotide is being phased out in the near future. 

When he examined her stomach, he found that her bowel is very full of faeces, which is the first time anyone has ever said that after examining her. If left, it could cause a blockage in her bowel (called Meconium Ileus Equivalent I think) so he has prescribed her 10 mls of Lactulose once a day for a while to clear her out. CFers can have problems with their bowels at times, due to the lack of lubrication in the bowel, making it easy for the bowel to block, but hopefully the Lactulose will draw more fluid into the bowel and clear her out.

The dieticians are also concerned about her nutrition, as she's never been the world's best eater, and lately her diet has really gone downhill. She hasn't had any form of dairy produce in six months now and that really worries me, as people with CF are very prone to osteoporosis, and start having bone density scans at aged 10-12, so calcium is very important to them. 

She is also low on iron, so we have been told to give her a substance called 'Spatone' to boost her iron intake and we have to complete a food diary to show exactly how little calcium she is having, so that they can prescribe her an adequate supplement of calcium.

She also hasn't grown or put on any weight, in fact, she's lost a bit of weight, so we need to try and feed her up over the Christmas period. 

Her asthma hasn't been quite as bad lately as it had been, but exercise is still a problem trigger for her. She had sports club after school on Thursday and she needed quite a lot of Ventolin after it. It's still better than it was though.

Last week, the Fantasy Charity Fund and the Family Fund paid for all of us to go to Disneyland Paris for 3 days, and it was an amazing experience. Seren had a fantastic time, meeting Donald Duck, Mickey and Minnie Mouse, Pluto, Winnie the Pooh, Tigger and her favourite, Belle from Beauty & The Beast. 

She loved going on the rides there too; her favourite was called Thunder Mountain I think, a runaway train ride which she absolutely LOVED.

She has been exhausted since we got back though, as there was an awful lot of travelling and walking involved in the trip, and she's still recovering!

Thank you SO much to the fabulous Elf Kate W, and to Helen Turner, both of whom sent Seren some very exciting-looking packages! They are currently waiting under the tree for her and she can't wait to open them on Christmas Day!