Our Pal - Philip H

Story written 2011

Philip was diagnosed with Spinal Muscular Atrophy (type 2 severe) when he was 18 months old and was only given 4 months to live! Philip is unable to walk, crawl, sit unsupported or move himself from one position to another and cannot roll or lift his arms up. He wears a spinal brace all day every day. He has limited movement in his hands and cannot lift anything or reach beyond arms length. He has a very weak grip and cannot do any day to day things like brush his teeth, get dressed, eat or drink by himself. He needs help with everything he does and tires easily.

Philip is prone to chest infections. He is unable to cough and has very weak lungs and goes into hospital regularly with pneumonia throughout the year. During the cold and damp weather and through the whole winter Philip is confined to being indoors as the cold and damp air affects his lungs. At home he has a Nippy 3 ventilator that helps him to breathe. He may have to undergo surgery to put a rod along his spine in the near future.

Despite all this Philip is a very happy, patient and lovely little boy who amazes the doctors and specialists he sees with this strength and courage throughout.

Philip’s favourite things are playing in his wheelchair with his brothers and sister. He never complains about what he goes through and rarely does he moan about being unable to join in with ‘normal’ things that this friends are able to do.

Update 15th September 2018

Philip is now 18 and off to University so is moving on from Post Pals.

Update 25th February 2018

This past month Philip has been a bit chesty, but overall in good health. He has now received an offer from a university!! So it’s been all go trying to get all his care needs sorted for whilst at university. We are also trying to find him a new powered wheelchair. On top of that Philip is currently in respite for a couple of weeks due to an extension we are having done to our home. So we have an awful lot going on at the moment.

Thank you for everything that has been sent to them. Jacob had lots of cards for his birthday and he loved seeing them come in the post! They also have loved their parcels they’ve been sent!

Update 23rd August 2017

Thank you so much for all of Philips and Matthews birthday cards! We have had a very busy few months as Philip has been unwell. He has done some A-level exams and we have had to start with a new care agency! Fortunately we so far have been able to enjoy the summer.

Update 5th March 2017

Thank you so much for all the letters and a the large box they all received from the Disney store!! Philip has been unwell the last week or so with a nasty virus but is starting to feel so much better now! Especially after getting his new Nintendo switch

Update 15th February 2017

Philip has been doing ok. He has had a few chest infections but fortunately has stayed out of hospital! We had a nice relaxed Christmas spent at home with family visiting.

Update 4th November 2016

Philip has had a bad month with his chest and was admitted to hospital at the beginning of the month. He’s much better now though. Thank you so much for all the cards and gifts they’ve all received!! I’m so sorry I’ve not thanked everyone personally or on the Facebook page but they have all really appreciated everything they’ve been given.

Update 5th September 2016

Philip has been ok this month. He received his GCSE results where he got 1 A*, 5A’s and 2B’s. He also had his gastrostomy tube changed to a Mickey button. The operation went ok but he required a lot of help during the intubation and the anaesthetist said he has an extremely difficult airway!! They damaged his throat and vocal cords during the procedure and caused a chest infection too but he has been recovering well. We spent a week in the children’s hospice, which was most needed! And then we had an absolutely amazing time at Chessington World of Adventures arranged by Post Pals themselves. Philip does seem to be struggling with his chest a bit more now and we are due to see his specialists about it soon. On the good side he is just about to start sixth form in a new school. He’s a bit anxious about it though.

Thank you so much to everyone that has sent cards, letters and gifts to Philip, Matthew, Joanna and Jacob. We appreciate every one of them! It’s just been an extremely busy month so have not been able to say thank you to everyone.

Update 28th July 2016

Philip has finished his GCSEs now and we are anxiously awaiting his results in August! We recently got him a Labrador puppy which is going to be trained up as an assistance dog for him to help him have a bit of independence. He’s been really well these last couple of weeks and has actually managed to enjoy the sunshine!! Thank you so much for all his gifts and birthday cards he received!! He had a fantastic birthday.

Update 8th June 2016

Philip is really quite unwell at the moment and struggling to keep up with his GCSEs. He has so far been able to stay at home with oral antibiotics and constant chest Physio, suctioning and spending a lot longer on his bipap. The community nurses have been to see him and taken a sample so hopefully will get it sorted without a need for a hospital visit! Thank you to everyone that sends letters and parcels to Philip, Matthew, Joanna and Jacob. It really is special to them.

Update 4th May 2016

Philip has had an ok month. He has missed a couple of days of school due to hospital visits and illness, but is now back at school. He did his first GCSE yesterday and is getting quite tired from all the work and is feeling very stressed. We took him to the cinema on Friday to watch the new Captain America film which he loved and was a nice chilled out time for him. Thank you so much for all the gifts he has received this month. He loved the star wars card and stickers!

Update 6th April 2016

Philip is doing ok this month. Still battling the chest infections, but with the warmer weather he’s definitely improving! Really enjoying the Easter break and finally being able to go out as a family! We did our first family outing yesterday to a local zoo and it was so fantastic being able to just get outside together and get some fresh air for the whole day! Other than that he’s just been chilling out as much as he can as his GCSEs are nearly here, with his first exam beginning of May. Thank you so much for the books that have been sent to them all, they were all so excited and happy with them!!

Update 7th March 2016

Philip has not been so good this month, quite chesty and suffering from pains in his chest. He has also lost a lot of weight so we’re currently experimenting with new feeds.

Update 6th February 2016

Philip is generally doing really well. He’s currently revising for his GCSEs, and has only had to have a couple of days off school due to illness, which is fantastic! He absolutely loved his Star Wars pop vinyl he received, thank you so much! Jacob asks every day if there is post for him. It really makes all their days when then receive things, so we are extremely grateful to everyone that has sent letters and gifts!

Update 7th January 2016

Philip has had a really good month, and for the first time since I can remember he was extremely well over Christmas! He had a great Christmas, and because the weather has been quite mild in December he has actually been able to go out and enjoy some of the Christmas events going on locally for the first time ever! He absolutely loved going to the cinema to see the new Star Wars movie and has already seen it twice! We all want to thank you so very, very much for all the cards and gifts everyone so generously sent over the last month! We had great fun opening the presents on Christmas Eve! And they were all greatly appreciated! Happy new year to everyone, love Philip and Susan (Philip’s mum).

Update 2nd December 2015

Update 13th October 2015

The cold weather has started and so has the chestiness. Philip has already had a chest infection this month.

Update 26th September 2015

Philip has had a couple of chest infections recently and another one is currently brewing. The change to the cold and damp weather really affects him. We are also still waiting to hear about his hips!

He had a great month in August, though, and was able to go out to some places like the cinema and London Zoo! He also had a couple of weeks in the children’s hospice, which he loves going to, and that helped to refresh him.

Update 5th August 2015

Philip has had a good month! We are currently away at respite for some much needed rest now that the school holidays have started!

We’re still waiting to hear about his hip operation and have some hospital appointments coming up, so hopefully we will get some idea on when it may be.

Thank you to everyone for all Philip’s birthday cards in June, he received so many and loved them all! Thank you to everyone that has written to him as he does appreciate it all, but is sadly unable to write any replies himself.

Update 23rd July 2015

Philip had another hospital admission due to aspirating again, but after a week in hospital and a following week in respite at his hospice, he was able to complete 3 of his GCSEs!

Update 1st May 2015

Philip started suffering from some seriously bad pain in his hips and back again last month so he is unfortunately back on regular pain medication. We also think we’re going to have to speed up his hip surgery to sooner rather than later due to his pain. We were hoping he’d be able to get through his exams first but now we’re not so sure.

We managed our first holiday together in over two years! Things didn’t go to plan with Matthew, Philip’s brother, being rushed into hospital with suspected meningitis! However, it was just some strange virus instead. It was very unusual being in hospital with Matthew and not Philip! Philip’s eclectic wheelchair also had some bad problems with its battery and kept draining, so we were a bit limited in what we could do, but other than all that it was just nice being together as a family!

Philip entered a chess competition and has got through to the UK finals! It is being held in Reading in July!

Update 11th January 2015

Philip had a much better end to the year after such a bad year for him with his health. We have had a couple of appointments with the consultants in December concerning his hip operation and are just waiting for some respiratory results before they will set a date. We are really hoping to be able to take him on holiday before his operation as the consultants are quite concerned about his recovery and how long that may actually take. His last holiday or any time away was in May 2013. He is a bit more settled with his health at the moment and hopefully it will stay like that for a while.

Philip is now struggling more with his hands so is not able to enjoy Lego anymore like he used to. He tends to just watch a lot of dvds now but more teenage ones. He is crazy about anything Marvel! He is still able to play his ps4 as he has an adapted controller and has his iPad and now a touchscreen laptop. He really loves reading comics and computer magazines as they are light and easy for him to hold.

Thank you for all the Christmas cards we received and thank you so much for all the fantastic gifts that were sent to Philip, Matthew, Joanna and Jacob. They opened them on Christmas Eve and we are so overwhelmed by your generosity!

Update 1st December 2014

Philip has had a good month! He has had a couple of chest infections and one got quite serious but we was able to manage it at the children’s hospice rather than hospital.

He has been really struggling with his food as he was allowed small tastes of food that is the right consistency, but even that now has been making him aspirate so we are waiting to speak to speech and language about what to do about that. He has his peg now so is tube fed anyway, but it’s just that Philip still likes the options to be able to eat.

He saw a hip surgeon last month too who wants Philip to have another operation – this time to replace both his hips, so at the moment he is undergoing some tests to see if he can safely have the operation.

Other than this Philip is definitely starting to be like his old self again (a nurse at the hospice said he was getting his mojo back at last).

Thank you for all the cards received so far, they are going up on Philip’s bedroom wall. Thank you for the horrible history games Matthew and Joanna received, we had great fun playing them as a family!

The children really appreciate being a part of Post Pals, thank you so much for everyone’s time and effort and to everyone who has sent them things!

Update 9th August 2014

Philip has had a really tough year this year. He got pneumonia, RSV and influenza H over Christmas and New Year requiring him to spend 6 weeks in hospital on an invasive ventilator. Due to this he has now lost his ability to swallow and so is tube fed. He is very upset about this and has lots of times when he is very miserable. He has unfortunately started to notice he is deteriorating, he has very little movement in his hands now and is awaiting a specialist controller so he can continue to play his video games on his playstation. He still really enjoys watching films though.

He now requires night time ventilation with a humidifier every night plus nebulisers twice a day which is increased when chesty. He now also has to have his mouth/back of his throat suctioned a lot of the time and uses a cough assist machine twice a day to just clear anything that might be on his chest.

As we are coming out of the summer, Philip will be confined to being indoors and missing out on school again as the risk of him getting chesty is very high.

Philip is a typical teenager but is finding life a bit difficult at the moment and is having to accept that his friends are able to do things he cannot. He is missing out on things, as well as the added blow of now not being able to eat anything anymore.

Thank you so much for Philip’s Star Wars activity books and his Star Wars toys, he really loves them!

Update 3rd January 2013

Philip was admitted to ICU on New Years Eve suffering with pneumonia and a stomach bleed. He was in a lot of pain and really struggling on Bipap so was placed on a ventilator and moved to PICU in London. Yesterday they needed to increase the ventilation and today he has taken a turn for the worse with his right lung completely collapsing.

Update 26th November 2012

Philip is going downhill with his muscle strength and eating is not great after his stay in the hospital last month. He is waiting for an appointment for a video fluoroscopy to see what is going on and we’re going to take it from there.

Last week we saw his spinal surgeon who wants to operate on his spine as soon as he can so we’re looking at March time, but due to his chest being so weak and being on bipap etc, he wants to have a respiratory check done at hospital first, to see if he can actually survive an operation. We’re not really sure what they will do if that doesn’t go to well, as the doctor has said his back is quite bad now and crushing his lung, which is causing the recurrent chest infections he keeps getting, so he actually needs the operation. Philip is terrified and to be honest so am I. He just seems to be struggling so much with everything, even little hand movements that a couple of months ago he was able to do. On the bright side, he doesn’t let it get him down and is still smiling.

Update 10th June 2012

Philip was in hospital over Easter with pneumonia and a collapsed right lung.

He’s actually going through a rough time at the moment as he’s starting to realise how much he can not do and is getting frustrated, especially with equipment like his bi-pap, as he hates using things but knows he now needs to and this is starting to make him depressed. He is also not able to eat very much and on the 26th of this month we are going to London hospital to see his specialist to discuss his deteriorating and possible tube feeds, which Philip is VERY worried about!

Anyway, thank you soooooo much for all that you do and he does love getting his post!

Update 23rd May 2012

Philip has deteriorated quite a bit in what he can do since he joined Post Pals. His hands are so much weaker than they ever were so he is pretty much unable to lift anything now, including food. He pretty much spends his time playing on his iPod as its all touch sensitive and watching DVDs which he loves! He keeps getting chest infections which are a sign of him worsening and is now using his bipap ventilator at home every night and whenever he is struggling.

Thank you for everything and all the post the kids get as it really does make them smile!

Update 30th May 2011

Philip’s operation went well and he recovered a lot quicker than the doctors expected, so he was able to transfer to the hospice a lot sooner than expected too. He is very tired and struggling a bit but is doing really well. Thank you for all your kind messages!

Update 25th May 2011

Philip goes into hospital on Friday for his operation and I just wanted to say thank you for all the cards and teddy he received. I will let you know how it goes. I’m more worried about it than Philip!

Update 13th May 2011

Philip had a long day today at the hospital for his pre-op assessment but was REALLY pleased when he got home to find parcels waiting for him. I just want to say a HUGE thank you so much to everyone who has sent us post!!