So, after a few months of what only be described as 'full of challenges' where Matthew has been challenged emotionally with an admission to hospital, academically, in doing his mock exams and physically, with his Expedition to complete his DofE it has ended on a massive 'high' today with the arrival of a mysterious package for Matthew.
His face was a joy to watch!
To each and every one of you ❤️Thank You❤️
To all the stitchers and the quilters and all the behind the sceners, your talent, your kindness and dedication and your selflessness is beyond compare.
Matthews quilt is just 'awesome'.
Matthew was formally diagnosed with Neurofibromatosis at the age of 4. Matthew inherited the condition from myself. Neurofibromatosis (NF for short) can be extremely unpredictable and no two paths are the same. For Matthew, he has a mild LD which has impacted on his Maths and English. He attends a Designated Provision within a mainstream School where his Maths & English is personalised and he has access to a TA for his other lessons.
Matthew was diagnosed with Hypertension at the age of 7. He has to take medication which is a chore as he cannot tolerate tablets (a sensory thing!!).
Matthew also has Verbal Dyspraxia - this has had a massive impact on his life. Matthew has so much he wants to say but can really struggle at times.
Over the years it has become apparent that Matthew has many sensory issues. Having his hair cut has been a long, long process for him to tolerate and only in the last couple of years will Matthew sit still to have his hair 'cut'. When I say cut, I mean clipped. Matthew will not accept any scissors at all and he still sits bolt upright without moving. Matthew will sometimes struggle with change and can worry over the slightest thing - such as the car breaking down. We would reassure him that the AA will come out but he will worry that they will get break down or get stuck in traffic or he cannot find us etc.
Because of the condition, Matthew needs ongoing health checks and we need to obtain some blood tests. This is proving to be a major, major challenge at the moment and we need to get Matthew comfortable enough to have the test. Matthew has tried oral diazepam, needle therapy and hypnotherapy, all of which has failed to obtain a blood test.
The next stage of this is to try him with gas & air so fingers crossed!
Matthew really struggles to settle at night. He finds it really hard to fall asleep. When he was younger he would be up and down the stairs for several hours.
Matthew is now at the age where he is at a heightened risk of developing the visible tumours. This can present with numerous problems depending on the size and location of the tumour.
Having NF leaves you pre disposed to an increased risk of developing cancer - of which I have had.
Despite his condition, Matthew has a fabulous sense of humour, is a typical teenager with an aversion to showering and doing homework but will talk your leg off about Star Wars!