Connor S
**Please do not send any food containing gluten, wheat, dairy or sesame seeds**
Story written 2016
Connor was born five and a half weeks early after a difficult pregnancy. Shortly after this he was admitted to the paediatric intensive care unit as he stopped breathing. He remained in the PICU for the majority of his first year, whilst they tried to find out why he was having constant episodes of apnoea or complete failure to breathe. They eventually diagnosed Connor with Congenital Central Hypoventilation Syndrome, (CCHS). It was also discovered through a DNA screen that Connor has an extra chromosome, which has caused an array of issues for him.
Over the years Connor has also been diagnosed with a learning disability, dyslexia, autistic tendencies, an anxiety disorder, migraines and Tourette’s Syndrome (Connor has facial and body tics and twitches and makes squeaking noises when he gets scared or excited). Connor also suffers from sensory processing difficulties. Connor has constant problems with extreme fatigue and widespread pain, which unfortunately mean that his life is very restricted. He spends the majority of his time in bed.
Connor does not get many opportunities to go to activities or on outings, as he needs several days to recover afterwards and frequently gets ill whilst he is out. We currently do not know if this is due to Connor being severely affected by his Klinefelter Syndrome or whether it is, as some doctors feel, down to either M.E. and/or Fibromyalgia.
Connor has had a very difficult year which has left him upset and depressed. He has always been as positive and happy as possible, given his conditions, so it has been hard for us as his family, to see him so down.
Update 9th October 2022
Thank you to everyone who has sent post to Connor recently. He saves every letter, card and drawing and they mean a lot him.
Thank you to Post Pals for Connor’s summer smile. He loves his Harry Potter Lego sets. He’s not felt up to doing them yet but as he collects them, he’s extremely happy to know when he is up to it, he can add them to his collection. Thank you to everyone who has donated to the summer smile funds.
Thank you to Bev for Connor’s Lego set, thank you to Sarah M for the fun rainbow package. Thank you to Ellie for the lovely Harry Potter stationary set and as always, thank you to Susan Russell and Sarah Heron for the regular post that you send.
Connor has had a very quiet summer. Unfortunately, we didn’t manage to get him out of the house at all for 8 weeks. He was just not feeling up to even a short trip outdoors. His wheelchair has now had the tilt function added, so hopefully when he does feel up to going out, this will help when his energy levels rapidly drop. We’re currently awaiting a decision from the OT’s over which hoist they believe will be most suitable and how long it will take to source it, to help Connor when he’s unable to transfer into his wheelchair without extra support.
Update 4th July 2022
As always, thank you to anyone who has sent any post to Connor. Thank you to Holly for the Marvel books. Thank you to Jen for the blanket you sent. Thank you to Lucien for your letters and as usual thank you to Sarah Heron, Sarah M, Bev and Susan for always thinking of Connor.
A huge thank you to Vikki, Dawn, Steve and Jill for all of your hard work organising the Chessington trip and thank you to Allied Mobility for sponsoring Connor’s room there. Connor would not be able to go to somewhere like Chessington without a room to rest and stay in, due to his energy levels being so low and him finding being in busy places particularly draining. Being able to go and see the animals, then rest and sleep, and then go to the sealife area the following day was brilliant for him. It was also lovely for him to spend some time with Eleanor G, as they have known each other for a long time now.
We have finally managed to get Connor’s wheelchair adjusted, as he has grown significantly since he got it four and a half years ago and he was suffering a lot of discomfort when using it for any significant length of time. Hopefully he will find it less painful now. He is also awaiting the addition of a tilt function to it, but that will take a little while longer to be done.
Update 25th March 2022
Thank you for all of Connor’s birthday cards, gifts and well wishes. He has never had so many birthday cards.
Connor has been struggling a lot with his energy levels, even more so than usual, which has led to him not being able to enjoy his hobby of Lego building much, unfortunately.
We are currently in the process of making our garden more accessible for him, in the hope that we can get him out in the fresh air a little more this summer.
We are also slowly rearranging all of his Harry Potter collectables (including the ones he got from his Post Pals elves), to make his surroundings, even more, Harry Potter themed than they already are. It really is his absolute passion. Thank you so much to Laura for the wonderful signed Luna Lovegood photograph. It is now framed and on display. Connor was very emotional when he opened it.
Update 5th January 2022
Firstly a huge THANK YOU to all Connor’s Christmas elves and anyone else who sent post to Connor and me. Connor was totally over the moon with the gifts he was sent and kept saying how amazing they were. We really appreciate the thought that went into all of them.
Also a huge thank you to Bev, Susan Russell, Sarah Mc and Sarah Heron for your constant happy post.
As always, thank you to the Post Pals team, especially Vikki, Dawn, Steve and Ally for all your hard work.
Update 29th August 2021
A huge thank you for all the post sent to Connor recently. An extra special thank you for those who regularly think of Connor. Thank you Susan Russell, for all your letters and for the wonderful basilisk ornament. Thank you Bev for your continued thoughtful post, and the amazing Fawkes lego, you always seem to know what will make Connor smile. Thank you to Sarah Heron, for her fortnightly post. Thank you to Sarah Mcclilloch for the wonderful Marvel name plaque and of course a huge thank you, as always, to the postpals team for everything you do, and organise, particularly Vikki, Dawn, Steve and Ali.
As a lot of people know, Connor is obsessed with Harry Potter and he frequently gets asked questions regarding this, so he has asked me to answer the most common here, as he can’t reply to a lot of the post. He is in Hufflepuff house, sorted by the Pottermore/Wizarding World quiz both when he was younger and when he wanted to check if he’d changed when he hit 18. His all time favourite character is Luna Lovegood. His favourite movies out of the set are The Deathly Hallows 1 and 2, but he loves them all. He does also enjoy the Fantastic Beasts franchise and would love to have a pet Niffler.
Connor has been recently been an in patient in hospital having had a severe kidney infection and UTI, he was extremely unwell and needed various treatments some of which he has had to continue at home. Although he’s never liked being in hospital, he found this time particularly difficult as he was on a busy adult ward and although we got given permission for myself to stay with him, due to his Autism and learning disabilities, there wasn’t really proper provisions set up for this either and so this upset him too.
In general, Connor is barely able to leave his bed at all at the moment, let alone get out of the house. Thanks to being able to access video chat, he is at least able to keep in touch with a couple of his friends. He is still taking a high dosage of the antidepressants and it looks like this will need to be ongoing. Connor really does appreciate every bit of post that he receives.
Update 21st June 2021
As always, a huge thank you to everyone who has sent Connor post, he really appreciates every bit he receives. He tries to reply to people who have given a return address, when he is up to it, but unfortunately he has had a lot of longer periods of being at his worst in the last 6 months, which has meant he’s not had the ability to send much.
Postpals has been a tremendous help to Connor over the years and he would also like me to thank Vikki, Ali and all the other volunteers for everything they do, as well as everyone who takes the time to write to him.
Update 30th July 2020
A huge thank you to everyone who has sent Connor post. His depression got so bad that he was put on to antidepressants in February and has had the dose raised twice since. These have seemed to help a little but the post that’s sent really does put a smile on his face.
As with a lot of others, Connor hasn’t left the house for 16 weeks now, unfortunately for the majority of that time he has had to stay in his bed, as his fatigue and pain have been so bad.
Whilst every bit of post is greatly appreciated, Connor wanted to say an extra thank you to Bev, for always thinking of him, to Susan from America, for all the post she sends, to Gwendoline and everyone involved in the special book and to all the ladies of the Postpals Sewing Bee, for the absolutely phenomenal Harry Potter quilt you made for him.
Update 2nd October 2019
Connor would like to thank everyone who has sent him post, it is very appreciated. Extra special thanks to Bev, Penny and Susan for being beyond amazing!
Connor has been suffering very badly with pain and fatigue during the summer.Over an eight week period, he only left his bed a few times for hospital appointments and as he wasn’t really up to going out, these appointments just depleted his energy levels even more. Being in so much pain is only adding to his low mood. He also recently discovered that some of his bowel issues and chronic stomach pain is due to him being extremely intolerant of wheat, gluten, dairy and sesame seeds, so he is having to get used to a new diet.
Connor really enjoys getting his post and he does try to reply to people when he is feeling up to it, so thank you again to everyone who sends him post.