My son’s brain tumour story

Hi, I’m Helen, very proud mum to my truly amazing son, Matthew.

Matthew is now 36 years old and four years ago he was diagnosed with a brain tumour.

The neurosurgeon recommended surgery to resect the tumour in his cerebellum. Sadly the surgery has caused many unexpected and life changing fallout conditions.

Matthew has a permanent tracheostomy to help with keeping his airway clear. He is unable to eat or drink because he has lost his swallow function. He is unable to work so has lost his full time income. Matthew has severe and continual vertigo, which affects his balance. He has an eye condition called Nystagmus, where the eyes flick constantly from side to side, making reading, watching TV, in fact focusing on anything extremely difficult. He has Ataxia, which affects movement and control of limbs. Matthew needs 24/7 care, which includes washing, dressing, toileting. He has to have all his medications and feed through a PEG ( a tube that goes directly into his stomach)

We are trying hard to get a wet room adaptions to his home so that he will be able to access a shower and toilet with some privacy. Currently he has to use a commode in the living room and have bed baths.

The neuro rehabilitation that he desperately needs to help him to be able to move around his own home has been woefully absent. The NHS currently supplies a community rehab assistant every 2/3 weeks, for one hour!

I am hoping to commission privately sourced neuro rehabilitation for him, which we know from using it in the past briefly would help enormously and show life enhancing results both physically and for Matthew’s mental health.

He needs a minimum of 5 hours per week ongoing, preferably more.

Matthew needs to feel hope. It is so incredibly hard to grieve for the life you have lost and to try and be hopeful for the future when everything is such a daily slog and battle to get the support he needs and deserves.

My initial target is to raise a month’s worth of neuro rehabilitation physio input. The cost is £220 per hour and so my initial target is £4000.

Matthew was very active pre surgery, having undertaken several solo travelling adventures in his 20’s.He was an outdoor rock climber, a qualified Kayak instructor, a mountaineer, and a county hockey player. He had a full and independent life as a valued member of his social circle and work colleagues.

I have included a couple of photos from his pre surgery years, and also a glimpse into his life ( or existence, as he calls it) now.

There are also a couple of post surgery rehab photos showing the possibilities it can bring with consistent engagement. There is an urgent need to resume this rehabilitation as an ongoing intervention for both his physical and mental health.

He has thus far been unable to access any NHS mental health support. I feel that the ‘system’ has abandoned him and that feels very isolating and makes me very angry and extremely sad.

Matthew is definitely one of the good guys in life. He has drawn the short straw. It could happen to anyone. He worked hard, played hard in his chosen leisure activities and does not deserve to be so disrespected, ignored and written off by the NHS.

Through no fault of his own he finds himself having to rely on others totally for his daily survival, literally.

Please, help me to help him.