Abbas' Story

Abbas was a happy, healthy baby, but as he grew, his mother, Dilara, noticed something was wrong. Abbas struggled to drink milk, cried through the night, and found it difficult to sit upright.

Walking came late, and he would often trip and fall. Despite numerous doctor visits, nobody seemed to know what the problem was.

When he was seven years old, Abbas began trialling medication to help manage his symptoms - a process that continues today.

Abbas deteriorated further when he was 10 years old after he suddenly developed extreme pain.

“He was crying and in tears.”

Abbas remained in hospital for nearly three months afterwards. For one year, Abbas was in and out of the hospital and unable to attend school.

Cindy provides practical and emotional support by taking Abbas out to the shops and playing with him, providing respite for Dilara and someone to confide in.

Without Rainbow Trust Dilara’s life would have been much harder.

"With support, Abbas used to be able to do all activities like other children, he would read books and do maths. Then he got really ill.

“I used to cry and cry; I didn’t know what to do. The doctors do not know how to control Abbas’s condition because it is so rare, and they are often trialling medication which can make his dystonia worse. As a mother I am not sure what the right choice is. Dystonia is for life so all I want is Abbas to be happy.

“Abbas is a very happy and beautiful boy. He's always smiling and laughing. He’s like a diamond in the family; he keeps everybody happy. When I see him go through all this he still gives me that smile that says he knows I’m worried but not to worry.”

No one knows what the future holds for Abbas, who is now in full-time education, but Rainbow Trust will continue supporting them for as long as they need.

"Rainbow Trust is amazing.”

With your help Family Support Workers like Cindy can make the challenges that families living with childhood illness face that bit more manageable.