Jackie and Ahmad – grandparents to Carter

“We would go to the sea – whatever the weather – take a picnic and head off for a nice day out,” said Ahmad.

But when their grandson Carter was born, their lives were soon to be turned upside down.

Carter's diagnosis

There was no indication at first that anything was wrong when Carter was born to their daughter Tanya.

But as a baby he didn’t seem to be developing as quickly as he should and then one day when Tanya lifted him up in the air – Jackie noticed that his legs were swinging like a rag doll.

They were shocked to learn that Carter had Spinal Muscular Atrophy which means that the nerve cells in his spine that relay signals to his muscles, don’t work.

Constant Care

He needs constant care which includes physiotherapy every day to try and invigorate and strengthen his muscles. Ahmad has had special training so he can give Carter the physiotherapy he needs.

Carter gets around in a wheelchair which he operates with his tiny hands. He has scoliosis of the spine and has to wear a body brace as well but is as bright as a button and has recently moved to a new mainstream school where he is doing really well.

Ahmad helps out every day

Every day after school Ahmad goes to Tanya and Carter’s home just around the corner from them in Wimbledon, to help her look after Carter when she is getting his meal and to help get him ready for bed. If Ahmad is busy, then Jackie goes instead.

It does impose limits on what Ahmad and Jackie can plan for themselves and they do find it is tough but they want to be there for Tanya and Carter and would not have it any other way.

Support from CHASE

Sometimes they visit Christopher’s with Carter and Tanya, which gives them some fun times together as a family and a chance to enjoy being with their grandson without having to worry about his care routine.

They also go along to grandparents’ days organised by CHASE which give them an opportunity to chat to other grandparents about their situation and share their emotions and experiences which Jackie and Ahmad find very valuable.