MY DYLAN SUPER STAR

Our son Dylan is only 12 years old but has already been through so much in his short life. He has a rare genetic condition called Trisomy 4p, which means he is severely mentally delayed. He cannot talk, is physically restricted and is fed though a peg (a small valve) that enables milk to be directly fed into his stomach.

Despite this he always has a smile on his face from the moment he wakes until he is asleep. All he ever wants to do is to play and anyone who has ever met him cannot help but smile back at him.

Unfortunately Dylan is currently suffering from AML [acute myeloid leukaemia] for the second time. He previously had it 4 years ago and at that time had an aggressive 6 months of chemotherapy. Even after that we almost lost him to sepsis. Subsequently his heart was damaged and he is still on medication to this day to help his heart function properly.

In June this year we then had the devastating news that after 4 years in remission the AML was back. Heartbroken doesn't fully cover how we felt. We were told that this time there were only two options, namely palliative care or a bone marrow transplant, which our consultant did not think he would get due to his condition. However, after a lot of discussion and deliberation I am delighted to say that it has been confirmed Dylan will have a bone marrow transplant. We have been warned this is no easy route and it will be a long hard battle. Dylan has been through so much already and now he has to fight for his life once again.

Dylan’s Care after transplant is very intense and a clean home with as much equipment to help with the care is a major priority. Although our home is clean & tidy there are a lot of jobs that will need to done to keep the risk of infection as low as possible. New plastering, painting and replacing carpets with hard flooring are examples of jobs required. We also desperately need toilet facilities on the ground floor of our house so this would also be done. A new fitted car seat will also be a benefit to allow easier access to and from the car. Ideally all these jobs need to be done before Dylan comes home in March as we will be unable to do these once he comes home. As we both have to be with Dylan whilst he is in hospital our wish is it to have them done while Dylan is in hospital and this will require the funds we are now trying to raise.

Dylan deserves, in fact needs a clean home with as much equipment in place to help with his ongoing care. Please help us to achieve this.

Thank you for reading this and thank in advance for your help xxxx