‘My son’s million-to-one condition leaves him like a rag doll for days’, says mum of brave tot


A brave tot is living with a million-to-one medical condition that leaves him motionless ‘like a little rag doll’ for up to 14 days at a time.

Lucas Wilton who turns three in April, suffers from a rare brain disease that can suddenly cause his arms and legs to flop and leave him unable to move.

At first the condition had baffled doctors in Lancashire and it was only when his mother brought him to Manchester’s St Mary’s Children’s Hospital that they were able to diagnose the rare illness.

His mother Jenna Stanworth, 27, has to carry her son in her arms like a doll for the duration of each seizure, which can be triggered by anything from too much physical activity to the wrong types of food.

The illness, called Alternating Hemiplegia of Childhood illness, affects one in a million people – and severe symptoms can remain with Lucas for over a fortnight before they pass.

Jenna, from Burnley, said: “The condition can come and go at random but it leaves Lucas unable to move at all when they come on.

“He is so young he doesn’t understand what is happening to him and we have to carry him around. Often he can be like that for days on end – even up to two weeks. It’s as if become like a little rag doll.

“After a seizure Lucas always seems to pull round and recover fully – and always carries on as if nothing has happened.

“He is a fantastic little boy, very tough and he never complains about anything. Last year doctors prepared us to face the fact that we may lose Lucas so for him to be here now and doing so well is just fantastic.’’

Jenna and Lucas’s father Jack Robinson, 28, first noticed something was wrong when their son was just four months old. The new parents noticed that their newborn’s eyes and body would twitch as he lay in his cot.

Jenna took the little one to the Royal Blackburn Hospital and Lucas was given numerous scans and tests as medics tried to detect what was wrong.

But doctors intially could not figure out what was causing Lucas’s seizures despite testing and treating him for epilepsy.

It was only months later in March 2012 when a doctor at Manchester’s St Mary’s Children’s Hospital diagnosed Lucas with AHC.

Jenna, who gave up her job as an optical dispenser to care for her son, said: „The seizures are awful. They can leave Lucas totally paralysed from head to toe for 14 days at a time.

„At one point it was so bad that I thought he was going to die. I didn’t go out of the house for five months because I was so worried about him.

„Lucas wasn’t diagnosed with AHC until he was 13 months old, so for all of that time I didn’t know what was wrong with him. I just wanted him to get better.

„When the doctor finally diagnosed him I could have kissed him. It was so good to finally know what was wrong with my baby.“

Lucas began treatment soon after his diagnosis and Jenna says she has been seeing great improvements in her child’s development ever since.

Lucas has even been able to enrol at a local nursery where staff have seen him hitting all of the milestones expected for a child of his age.

Jenna said: „Lucas takes a liquid medicine and tablets twice a day and he is coming on great. He is like a different child to what he was like before.

„He still suffers from episodes and when he is paralysed he just cries and cries.

„Sometimes he can be paralysed for a few hours, sometimes it can be 14 days. Some days it can be just one side of his body that is affected but other times it’s his whole body. His episodes are really unpredictable.

„All I can do is hold him and hope that it will stop soon.

„There is no cure for AHC and it is something Lucas will have to live with for the rest of his life, but I am so proud of him. Lucas loves nursery and he has improved 100%. His vocabulary has increased and he has really come on.

“He started walking in June last year and he is doing well although he can’t walk long distances. He has done so well.“

Jenna is now hoping to raise the cash to buy Lucas a specialised car seat for him to travel in whilst he is unable to move.

She hopes that being able to take her son out of the house will give him things to look at while he is suffering from his seizures and also get him to hospital appointments easier.

Jenna said: „A specialised chair would mean I could take him round to family members’ houses when he is paralysed to give him a change of scenery and some fresh air. It would make a huge difference to us.“

Mancunian Matters