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

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Xander G's Parents/Guardians

Stacey and Steve

Xander G's Siblings

Killian 22/04/2003 (has learning difficulties) Loves cars, Top Gear, Lamborghinis, Transformers, Ben 10, The Simpsons, Wii. 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, cars, dinosaurs, drawing, books, Go Diago Go and Dora, Wii, animals, cooking, Manchester United, collects snow globes.

Xander G's Favourite Colour

Red

Is Xander G able to read?

No

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 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.