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Matty's Story

Matty's family visited the Cotswolds in July 2023.

Matty 💙 In December 2016 Matty had just gone up to senior school, he loved life, loved learning and was a really happy boy.

Football and being a cub leader were his passions and was really excited to be old enough to start his D of E!

He started having headaches and vomiting, school would ring for me to collect him and he would have calpol and happily spend the rest of the day on his PlayStation!

His older sister Molly has migraines and I just presumed he had too! After being called from work on a couple of occasions it happened again on my day off so I thought I would shut school up and show them he was fine….. how wrong could I be??

When we arrive at the Gp’s Matty tells her he has double vision…. News to me! She does a thorough examination and says she will refer him for a CT scan, she also gave me a piece of paper saying he had signs of cancer and would be seen within 2 weeks, I thought…. What rubbish and binned the note!

A week later he was scanned and our world changed forever, he had a tumour the size of a tennis ball in his brain. Everything was a whirlwind after that, 3 days before Christmas he had surgery where he was found to have medulloblastoma. At this point we were told they would throw the book at it but should it come back it would kill him.

The fight began, radiotherapy for 6 weeks and chemotherapy for 18 months. Like most children he was unwell during a lot of the treatment, ended up with a gastrostomy, he was also unsteady on his feet and had severe double vision now permanently, but we made the best of it and had fun whenever he was well enough.

Football was a thing of the past and he took up canoeing and table tennis…. Doing remarkably well in spite of seeing 2 balls! Finishing treatment he started a new ‘normal’ life, he suffered from chronic fatigue and walking long distances was an issue but he persevered, happily returning to school and completing his D of E bronze!

Christmas 2018… we had the shocking news that it had returned, he had no symptoms so it was a bitter pill to swallow, we were told all treatment would be palliative or he could opt out of treatment. This for Matty wasn’t a question, by this point his grandma was fighting cancer too and he wanted to fight with her. Removal wasn’t an option this time so they inserted a port into his head and he started daily injections into the port. Unbelievably after 9 months of treatment the tumours disappeared, we knew we shouldn’t be hopeful but it was hard not to be as it was an unexpected result.

Sadly it was not to last and the tumours returned with the arrival of Covid and this time he was offered SRS treatment in London.. and… it worked….. initially. 6 months later it returned. By this stage Matty’s body was shattered, he was unsteady on his feet, his treatment had given him memory loss and his chronic fatigue was so bad he had little energy to do anything, but he wanted to fight on.

His grandma had passed away after a hard battle and he wasn’t ready to give up the fight. He achieved 6 GCSE’s grade A despite his lack of memory and started 3 A’levels, biology, chemistry and maths as he was still hopeful of becoming a Dr. Very quickly he dropped to 2 A’levels then 1 as he couldn’t manage to put the work in or attend the lessons as he was constantly exhausted. Christmas came and he started to deteriorate (Christmas was a bad omen for us by this point) and he was in hospital as he was slurring his words, falling over and wasn’t right. Scans showed that he was still clear of cancer and they had no idea what was going on, We went home but Matty was confused and falling constantly so we all went went to stay at our local hospice to see if we could get some help. Sadly from here he continued to deteriorate and after a few days was on a syringe driver to keep him comfortable.

He passed away on 5th February 2022 age 17, after a 5 year fight. Life without him is so hard, we miss him more than imaginable. Home is just empty without him. You should never outlive your children.

We are so looking forward to a few days away and are truly grateful to the Ben Saunders Foundation for their kindness 💙

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