C/O 19 Robert Owen Gardens
Northenden
Manchester
M22 4DD
United Kingdom

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

Email Pal

Xander G's Parents/Guardians

Stacey and Steve

Xander G's Siblings

Killian 22/04/2003 (has learning difficulties) Loves cars, Top Gear, Lamborghinis, F1 (especially Jenson and Lewis), but all teams, Transformers, Ben 10, The Simpsons, Wii. He also loves animal books (especially polar animals and sharks/whales etc). Louis 10/10/1996 likes X Box, drawing, rugby, football (especially Manchester United), pop music and The Simpsons.

Xander G's Interests

Riding his bike, watching Disney, Ben 10, The Simpsons, SpongeBob, cars, dinosaurs, drawing, books, Go Diago Go and Dora, Wii, animals, cooking, Manchester United, collects snow globes, likes biff and chip books (oxford learning tree). Doesn't eat chocolate.

Xander G's Favourite Colour

Red

Is Xander G able to read?

Yes

Is Xander G able to use hands?

Yes

Is Xander G visually/hearing impaired?

No

Does Xander G suffer from any developmental delay?

No

Story written 2010

Xander was diagnosed with X-linked agammaglobulinaemia (XLA) at 18 months old.

He had always been sick as a baby and always had a cough and cold. When he was just over 12 months old, Xander got cellulitis in his hand which travelled up his arm and into his blood stream within 24 hours. He was given antibiotics which didn’t work so had to be admitted to hospital for IV antibiotics.

He was only out of hospital for a short while when he became very sick one night, so we took him to A+E where they found he was neutropenic. They transferred him by ambulance to a specialist hospital where they did a bone marrow test, but the doctors still didn’t know why he was so ill.

Xander then had 6 weeks worth of blood tests and was finally diagnosed with XLA. Since diagnosis, Xander has had an abscess on his neck that he had to have surgery on twice, and the cause of this was a flesh eating bug called necrotising lymphadenitis.

Xander has to have blood plasma twice a week which is infused into his leg and the amount will get more with age. It takes 3 hours each time to infuse the blood plasma. He will have to have this medicine for the rest of his life as Xander’s condition is not only life threatening but incurable. He has to have a lot of antibiotics too, some long term. We also have to keep everything extremely clean to stop him getting germs.

Update 31st December 2011

Well, Xander has been generally well this past month which i have put down to the unusually warm December that we’re having and the daily antibiotics that he's on at the moment. 

We managed to get to the pantomime and to see Father Christmas this year, something that we hadn't managed last year due to one illness or another.

We also had a quiet Christmas day which was nice. We visited Xander’s grandparents as his granddad had just had an operation and couldn't come to us, then we came home for Christmas dinner and a quiet afternoons playing with the toys. His favourite was his CD player as he has really got into music at the moment. Killian only wanted books and dvds so that was mostly what he got and Louis wanted an ipod touch so Father Christmas got that as well.

Well, to the thank you's... firstly i would like to thank the Post Pals team for their hard work this year, to Maltby Academy for all the lovely gifts and cards that the pupils and teachers sent the boys (you really are a truly wonderful school and you should be very proud of yourselves), Xander also loved Percy the Penguin and we've been to the build a bear for more clothes for him since. I’ve never seen the boys so surprised when they opened the boxes. Also, a big thank you to the 'elves' and the 'reindeers', the kids are still racing the reindeers as i type. Anther big thank you to Jenny, Sarah, Teresa, Dottie, Gill, Elske and Linda and to everyone else who took the time to send the boys a letter or card or a lovely gift. You all make my boys smile which is what this charity is all about.

Hope you all had a lovely Christmas and hope you have a wonderful New Year.

Update 8th October 2011

Xander has been generally up and down with his health this last month; he has had a week off school and been to A&E already since being back at school.

We had to see his immunologist last week as the antibiotics that he has don't seem to be working anymore and he was getting repeated infections, so we are now trying a different antibiotic which, fingers crossed, works for him. He is only to take it for 3 days out of 7 as it’s a long lasting antibiotic, but the first week I haven't seen any change in his infections though I am trying to be optimistic.

He's enjoying being back at school with his friends and he really wants to learn all the time and loves books. He misses his friends a lot when he can't go into school.

Killian has recovered from his broken arm, although he did fall on it the other day and I was concerned as he refused to use his arm for a couple of days, but he's back to using it ok now - luckily. We’ve seen the doctor about the lumps on Killiian’s feet and now we are just waiting for the ultrasound of them which is to be done in December.

I would like to say a big thank you to everyone who took the time to write to my boys, including Sarah G, Dottie Dalmatian, Teresa, Rachel, Tashi. The boys have received some birthday cards but they haven't opened them yet so I will send big thank you's your way next month.

Update 5th September 2011

Well we managed to get away at the beginning of August; two weeks in sunny Tenerife were definably what the doctor ordered. Xander was well for most of the holiday, but the air conditioning in the apartment made him chesty and gave him a cough. We had taken the precaution of taking antibiotics with us, along with all the rest of his medication, which makes for fun when getting through security.

Xander saw the specialist about his bone tumours this month and she was pleased that they haven't grown into the bone, that no more had appeared, and that the ones that are there have not got any bigger. We have to go back next year for repeat tests unless we notice any difference with them.

Unfortunately the same doctor who diagnosed Xander wants to see Killian’s feet as he has lumps on his feet. It may be a coincidence but it may mean that its hereditary and that both boys have osteochondoroma.

Killian’s arm is much better after he broke it. It has mended well and the physio that he was seeing for his legs and stomach muscles is now seeing him for his arm as well, which is good.

We also took Killian to see Jenson Button in Manchester city centre last week and he absolutely loved it, he is cars mad so F1 is right up his street.

Both boys were back to school today and already Xander has come home telling me he doesn't feel well. He is very whiny and I’m just hoping that its tiredness and not something starting already. We had this last year where he spent most of the autumn and winter off through illness.

Were at the PIA meeting (primary immune deficiency) on Saturday to hear how they are progressing with finding cures for illnesses like Xanders. Although some are already curable through bone marrow or stem cell, Xander’s condition is a long way off being cured as they haven't found a way in lab studies yet, but we’re hoping they might have some more information on the subject for us.

On to the thank yous. I would like to say thank you to all those people who took the time to send my boys post/gift, they appreciate every piece of post they get and look forward to receiving it. Also a big thank you to Post Pals for the large box of gifts that the boys received, they have made scary aliens, and dug up the dinosaur bones already, and it kept them quiet for the afternoon.

Update 29th June 2011

Xander has had some more diagnoses this month to go with his illness. He was diagnosed at the start of the month as having Osteochondoroma which is benign tumours - at present he has 5 but some of them have only just appeared so he could potentially get quite a few. Apparently they don't stop growing or coming until he's about 16, so time will tell if he gets any more, how big they will get, and if he will need any removing. He was also diagnosed with having Asthma which he is on a preventer for twice a day.

He's not been that great in himself so we’re back on the antibiotics (strong ones) for two weeks and then he's got to have some others for months to try and keep him from getting infections.

Xander attended the Post Pals party and enjoyed himself, especially on the inflatable slide and the bouncy castle. He also won three raffle prizes which was nice.

Were going to see the new Transformers movie this weekend and have lunch out as long as he's okay, so it will be nice to go out as a family.

Thanks to all those who sent Xander and his brothers post this month, it is much appreciated.

Update 5th May 2011

Xander underwent his operation on his foot which they thought was a cyst; however the operation didn't go according to plan. Since the op he has had to have an ultrasound scan to see if it could throw some light on the situation. It turns out that the lumps on his foot as caused by the cartilage expanding in certain places and he now has 3 lumps on one foot and two on the other. We have to wait to see the specialist but we have been told it could be very likely he has a condition which means the cartilage in his body expands and can cause him a lot of problems. So we are waiting to here what the doctor has to say on the matter.

He’s at the hospital for his quarterly year check up next month and they are going to check him over as he keeps on getting bruises on his stomach and back. Hopefully it’s nothing too serious though.

He has also had the staph infection back in his nose so he's been on the strong antibiotics again; just wish it didn't keep on returning every few weeks.

Killian has started school this week. He is only going a couple of times a week for starters as they are not sure how his autism is going to affect him in class, but he seems to be enjoying it though. He also had his birthday at the end of April and had a pool party in the back garden with his cousins. The weather was great and they enjoyed it.

I would like to thank all those who take the time to write to my boys as they love receiving letters.

Update 8th March 2011

Well, where do I start with this month… its been hectic with appointments, some weeks I had appointments with the kids every day, and we also had the ashes ceremony for their granddad this month at Old Trafford. The kids have had some minor illnesses between them (me included) but nothing major to report.

Xander has started getting some bruises in some places, like his back etc, so we are having to monitor them at the moment as it should be that his blood isn't binding properly, or it could be something completely different. We will wait and see, but if he gets more they want to do some blood tests on him just to rule anything nasty out.

The kids had a quiet week off school, we went to the pictures to see Yogi Bear but didn't really do very much else, though I did get some professional pictures done of the kids too which are due to be collected this month.

Xanders run of illnesses is spreading itself out now that the weather is starting to pick up, so fingers crossed that it stays that way.

March is going to be a busy month. We have Killian’s appeal for school (fingers crossed that we win), Xander has to have the cysts on his foot removed on the 21st so he will be having a general on that day, Louis has started a chef academy program each Saturday where he's learning the basics of becoming a chef (that’s what he wants to do), and the disabled facilities grant people are starting work on Thursday to put a toilet downstairs for Killian, which will be messy as they are having to dig down a few feet in the hallway for the pipes etc. We’re just hoping that all the muck and dirt doesn't cause Xander too many problems.

Last but not least, I would like to thank everyone who took the time to write to my children this month as it is welcomed with big smiles and read over and over with such joy, so thank you.

Update 30th January 2011

Well the start of the year didn't go too well for us with Killian being admitted to hospital after his face blew up on New Years Eve caused by his abscess. The second lot of antibiotics brought it under control, but he now has to have his tooth removed as the abscess is deep in the jaw. The tooth is actually okay it’s just that they need to remove it to clean the abscess out and he will have to go under a general to have it done.

Then on the 12^th January Killian again became unwell and after a visit to the GP's they sent him straight to the hospital where it was discovered that he had viral meningitis. It was only a mild case, so after a day in hospital he was allowed home to rest. The symptoms lasted about 11 days before he was back to normal again.

Then on the 21st we were told that Killian has Autism with development delay and speech and language delay. To be honest we already knew, it was just getting a diagnosis that was the problem, as he had already been told 'maybe' by one place, so we went to a different centre who did some more testing with Killian and they came back with 'Yes he is Autistic'. We are due next month to discuss everything and how the future will look and how to handle Killian with the specialists at the centre.

However, Xander has had a good month this month, apart from his cold returning again, and a few sicky nights. Nothing major this month for Xander, but we are in with his consultant next month so we will wait for what he has to say - should have been this month but his consultant got stuck in Germany due to the bad weather.

On the 24th though we did get some more bad news in that their Grandad (who lives in Spain) had died. So all in all we have had a shocking start to the year, that has been incredibly busy with an appointment of some sort nearly every day and lots of bad news - including that my credit card had been hacked, so if there ever was a time when you want to rewind the year and start again then this month has been that time. Roll on next month and hopefully we can put all this bad news behind us.

I just want to add a thank you to all those people who took the time to send my children some post. They loved the aeroplanes and the flying bugs and the car crashes dvd, and Killian has taken all the pictures on the Ben 10 camera sent to him as part of the memories theme and we just need to get them developed. The cake mix is about to be done today as we’re having a baking day, so thanks to everyone as my kids really need to be cheered up at this moment as it has been a bad month all round.

Update 11th January 2011

Firstly, to start the year off, I would like to wish every one of you a very Happy New Year.

Xander had his ups and downs last month, but luckily we managed to get him sorted after trying out a couple of different antibiotics. He wasn’t very happy or very well at times but by the end of the year he had got over the worst of it. We had a lovely quiet (well kind of) Christmas, the boys were up at 7am and ripped open their presents. All of them were well so I couldn't have asked for more.

After Christmas, Killian started with a sore mouth which turned out to be an abscess in his jaw (quite deep). It took two lots of antibiotics and a trip to A&E on New Years Eve (after his neck and face ballooned) but the antibiotics worked eventually. However, he has to go into hospital to be put under general to have his tooth removed and his abscess taken care of which we should hear about in the next two weeks.

Since the New Year we have had an appointment for something or other everyday (once we got the bank holiday out of the way) and some days two, so it has been quite an eventful month already. 

Killian has finished his assessment at the Autism centre and we will get the results back on the 21st January. I’m not sure what result I would like the most as although I don't wish Killian to be autistic, I would like some answers for the way he behaves and the mannerisms and the reasons he does those quirky little things he does. So, what will be will be.

Now to the thank you's. As always I would like to thank the people who send my boys post on a regular basis and to let you know that it is very much appreciated, so a big thanks to Teresa, Rachel, Mandi, Sarah G, Dottie Dalmatian and Naomi. I would also like to say a big thank you to Maltby Academy in Rotherham who made some lovely cards and sent some gifts to xander, he truly loved each and every card and they took pride of place on our wall, along with all the other cards sent by the friends of Post Pals. We have never had so many cards and we ended up with 10 lines of cards around our living room.

I would also like to say a big thank you to the person who sent the remote control mini for Xander - we're not sure if it came from Cadburys (the frank mark on the front of the box had Cadburys, Bornville written on it), but as there was no letter/card in the box we weren't sure who exactly the car came from.

To every one else who took the time to write, including all the 'Reindeers', I would have liked to thank each and every one of you personally, but as he received over 50 letters, cards and gifts, I don't think I would have enough space for Xander’s update. However, you know who you are and THANK YOU. You are all lovely kind hearted people.

Update 3rd November 2010

October hasn’t been a great month for Xander, what with numerous appointments, including one for surgery on his foot which he has been scheduled in for, but also put on their emergency list incase they get a space in theatre. He's also had a nasal infection which isn't pleasant for him and he was put on antibiotics for it. This then led to an upset stomach and you can gather what it caused him to have for nearly a week, not good when he's already very skinny. He then went on to develop a cold which then turned into croup. This isn't great for him as there is the risk of it turning into pneumonia, so the decision was made to take him into hospital with it.

At hospital they could only monitor him as he can't have steroids due to his immune system problems and he was already on antibiotics, so monitoring him was all they could do for him. Luckily it cleared up in about 5 days but then it passed on to his brother Killian, so we've had a germ infested house for a good few weeks now.

Apart from the above, everything else has been okay. He had a quiet birthday for which he got a vtec camera and he has taken loads of photos with it.

I want to thank everybody for the lovely birthday cards which he received; they all took pride of place on our cabinet in the living room. I also want to thank everyone who has sent Xander and his brothers some lovely letters, cards and gifts, which include the Halloween goodie bag, Ben 10 doll, dvd, Toy Story pencils, socks and chocolate eyeballs, a scary bouncing egg, a Lamborghini poster with Killian’s name on the number plate (he loves it), lots of jokes handwritten (the kids think they are hilarious and keep on telling everyone them) and the bracelets that were made for them.

You all are wonderful people and make my kids smile with every piece of post that arrives. They all have their own special Post Pals box which they keep their post in and it really does help, especially when my children are unwell, so thank you.

Update 8th October 2010

Firstly I would like to say a big thank you to everyone who sends my 3 children post as it really keeps them smiling. Thanks especially to Teresa, Samantha, Mandie, Sarah, Rachel, Liz (it was very kind of you to knit the red dinosaur and it sits proudly on his bed), and not forgetting Dottie Dalmatian. Hopefully I haven't missed anyone out.

Xander has started school since my last update and is loving it. He has to have his little bottle of antibacterial gel strapped to his side and is constantly washing his hands but luckily we have managed to ward off any nasty germs affecting him as yet, though I do dread the winter months. We had a close call when my nephew developed shingles a couple of days after us visiting him, but luckily Xander was okay as the spots hadn't appeared whilst we were there.

We had a problem last week with Xander’s infusions as he is on blood plasma infused over 2-3 hours twice a week, but unfortunately the needle didn't want to go into his skin and when it did managed to he was in immense pain, so we had to give up and try again another day. This isn't good because the longer between infusions the more likely he will catch something. We’re hoping it is a one off but we think he might have to start using a different part of his body for infusions soon to give his legs a break as the skin is hardening, but it is trying to find a suitable place for the infusions as Xander is really skinny and the needle really needs to go into a fatty part of his body.

We've got quite a few appointments this month between Xander and his brother Killian, as Xander’s got the appointment we have been waiting for about surgery for the cysts he has got on his foot - I do hope they remove them soon as they do cause him a lot of pain, mostly at night. Killian’s got genetics and autism testing and back to physio again this month as he has lots of things wrong with him but the doctors would like to find out if there is a link and a diagnosis for him. Take last week - he couldn't walk for a couple of days after popping his knee joint out (that’s hyper-mobility for you) and his dyspraxia makes life difficult for him anyway, but he grins and bears it and gets on with life.

Louis is doing really well at school this year, he's earned loads of merits already and is set to sit some of his GCSE's this year, so it is hectic for him but I think he's up to it.

Anyway, just to end with a big thank you once again to everyone - it is very much appreciated.

Update 9th September 2010

Xander has been generally well this month, though he’s had quite a few bangs, cuts etc to have to deal with. Though he has woken up this morning with a rough cough and dribbling nose so I’m hoping that it is not going to turn into anything nasty (as very often happens when Xander gets coughs and colds).

We’re still waiting to see the hospital specialist about his foot as there was a mix-up and they sent us to the wrong surgeon, so the next available appointment is the 18th October though they are trying to reduce this to an earlier date.

Good news this month is that he has got a place at primary school on appeal (it was a worrying time not knowing), so he should start next week after we have had a meeting with the head and put some measures into place regarding Xander’s health.

Killian hasn't been too great this month after catching a bug that he can't shift, but apart from that he's okay. Louis went back to school this week, think he was glad to see the end of the 6 week holidays as he was missing his mates. Good news is that he's in the top set for his subjects and apparently they can now take their GCSE's in year 9 if they’re in the top set, though I’m not too sure of this.

Well on to the Thank you list and there is a lot! Big thanks to Teresa, Arlene, Charlotte, Maria and Michael, Dottie Dalmatian for letting us have a pup (he's been named Dougie), Alison, Rachel, Samantha, Murphy the Gnome, Kim, Sheelagh, Else and Mandie. Sorry if I’ve missed anyone out, but thank you to each and every one of you for putting a smile on my children’s’ faces, it is very much appreciated.

Update 8th August 2010

Xander has been mostly well this month with only a few little hiccups, but nothing too bad that we couldn't handle. We had his 6 monthly review at the hospital and all seems well. His medicine dose hasn’t been increased just yet so this is good for him, though he has got some cysts on his left foot that have been causing him real pain, especially in an evening once his body starts relaxing. He can scream for hours and calpol and ibuprofen doesn't do a great deal but we try massaging the area as well which does seem to help a lot. We are to see the surgeon on Friday 13th to see what he thinks and to talk about having them removed, which will be good in once sense but he takes longer than average to heal and an open wound isn't the greatest thing for him to have, but it needs to be done.

We had a bit of bad news as well this month, as having heard nothing from the schools admissions, I rang to find out what was happening and was told they were sorry that we hadn't been told anything as there was a computer error and some people didn't get the letters, but Xander had been turned down for a place at our chosen school and that he was 32nd on the waiting list, so we have to go to appeal on the 3rd of September, but it doesn't look good (fingers crossed though). What gets me is that Xander needs a school where I can be confident in the staff’s abilities to be able to deal with Xander quickly as even getting a cut dirty can be serious for him. We also need the school to be not too far from home or too far from his hospital. The only other school they offered as an alternative is two bus rides away and in the opposite direction from his hospital, so it may be that he has to be home educated like his brother Killian for the time being until they have a place for him.

On a good note, we've been away to Center Parcs this month which the kids love. We didn't get too wet either and had just one day of rain. The two youngest even had a go at kids crossbow which was good fun to watch and I got talked into going horse riding which wasn’t as bad as I expected. We also went out on a double canoe on the lake which was a laugh and we were singing this tune to Hawaii five-o whilst rowing.

Killian’s Maclaren Major buggy arrived at last as he has very hyper mobile joints, low tone, dyspraxia and a few other things wrong with him as well as his learning difficulties, so we can now put him in the buggy when we go out as his legs hurt very quickly once he starts walking around. He's even got a transformers seat cover for it as well.

Xander and the boys have had a good deal of post from Post Pals buddies this month which are greatly appreciated and the boys look forward to the post being brought to them, so thank you to all of you. We’d like to thank everyone who sent Xander and his brothers some post this month; you are all very kind and thoughtful people. This includes S.R Gilligan, Rachel, Jodie (he loved the Phineas and Ferb stickers and the colouring set), Sarah G for her numerous letters and postcards, Lauren and Phil for your talented handmade cards which were fab, Susan, Percy the dog (who knew dogs could type!!), Kim, Betty Graham whose card and stickers came all the way from Australia and he hasn’t opened the stickers as he says they’re special as they have come from another place far far away and wants to keep them, Margaret Baldwin, Teresa, and I’m really sorry about this but not sure whether the name is Jake or Jane who sent the pictures from their farm of the baby lamb. I really hope I haven't missed anyone out, but if I have, a big thank you to everyone.

Post Pals has been wonderful for Xander and his brothers, the thoughtfulness and kindness of complete strangers who take some of their precious time to put a smile on my sons’ faces is amazing. Words can't thank you all enough.