Malachi was born with a genetic condition
Three year old Malachi Tyler was diagnosed at birth with Neurofibromatosis, a genetic disorder in which the nerve tissue grows tumours. The severity of the condition varies from one person to another, even in the same family. Three out of four of Malachi’s siblings – 7 year old Ayesha, 9 year old Samuel and 10 year old Zach - have the disorder so parents Emma and Graham weren’t unduly worried when Malachi was first diagnosed.
When Malachi had just turned one, his parents noticed that he was having problems with his vision and an MRI scan was arranged at St Thomas’ Hospital in London. About two weeks after the scan, Emma received a call from the hospital. “I was very scared when the doctor wanted us to go the following day. It was too much for me to bear and I wanted to know more there and then; there was no way that I could wait until the following day.”
The doctor said that scan results showed Malachi had an optic glioma, a tumour that grows in various parts of the brain. The family went to the hospital the next morning and were told that Malachi had no sight in his left eye, limited sight in his right and that further deterioration should be expected. Malachi was immediately referred to the Royal Marsden Hospital to receive his chemotherapy. It was here where the family first heard about Rainbow Trust Children’s Charity and soon met Tori, a Family Support Worker from the Surrey Care Team who immediately began to support the family through the difficulties of his treatment.
Six months after the tumour was diagnosed, Emma noticed that Malachi had started to walk into furniture and called the hospital for an urgent appointment. They confirmed Emma’s fear; Malachi had gone completely blind. “Even though I knew that Malachi had lost his sight, it was a sad day when it was confirmed by the doctors.”
Hospital Support from Rainbow Trust
“Over the last year, we’ve had some pretty dark days and we were all thankful that our Family Support Worker Tori was there to support us through them. When Tori visits, she spends time with Malachi’s other siblings and has built up such a good relationship with them all, particularly our 15 year old daughter Kirsty. Graham and I are so grateful for the support she gives to us all. She will pick up and take the children to school and has taken Malachi to hospital when we’ve not had access to a car. I know that I can call Tori whenever I need her if I need someone to talk too. We really appreciate the care and support Rainbow Trust has given us, in fact, I don’t know how we would have got through this without it!”
Tori has now been supporting the family for 18 months and Malachi’s treatment continues. “I enjoy working with the Tyler family because I believe that I’m making a real difference to the family and that’s what it’s all about.”
