Father – Syed’s story
My daughter is 8, and my son, 6. My daughter’s symptoms started when she was 3 and have been progressing fast. Now, she can no longer get up from the floor. It is very sad to see that she is getting weaker and weaker day by day.
My son is affected with learning difficulties (another symptom of the condition). He is two years behind for his age, which makes it more difficult for him and for us.
I always take them to small activities around my area – they are especially busy during the school holidays. I take them on school trips, to the zoo when the weather is nice, and on trips in a caravan… I took them to Disneyland Paris twice, which they enjoyed so much. I like to keep them active.
I’m planning on moving to a new house with a nice garden; that way, we can do some gardening and have a soft play area. I try to stay positive and strong. I always think about the best thing I can do for them.
I give them the most joy and love, so they don’t feel let down. It is the only care they have, because they have no cure.
Don’t listen to the negative
Syed: Don’t listen to the negative. There is a lot of people who don’t know. They don’t know the condition; they don’t know the outcome. They don’t understand. These people think disability looks like one thing and is always awful.