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Burnley tot has one-in-million brain disorder

Jenna Stanworth with her son Lucas (2) who suffers from a rare brain condition.

Jenna Stanworth with her son Lucas (2) who suffers from a rare brain condition.

Burnley tot Lucas Wilton is one in a million.... literally.

For the lovable youngster suffers from a rare brain disorder that is believed to affect only one in a million children. The condition is known as Alternating Hemiplegia of Childhood which causes Lucas to have sudden seizures that can leave him paralysed for several days.

For the first year of his life doctors believed that Lucas, who will be three in April, was suffering from epilepsy. But they realised it was more serious when he suffered a seizure that lasted for several hours. Lucas was rushed from the Royal Blackburn Hospital to St Mary’s Children’s Hospital in Manchester where he was placed on a ventilator.

Lucas’ mum, Jenna Stanworth of Melville Street, said: “I believe that Dr Richard Newton and his team saved Lucas’ life that day. It was Dr Newton who looked into the possibility that Lucas had AHC and he placed him on medication that had been used in a trial on a girl in India who suffered from the condition.

“Doctors had warned us to expect the worst and I really thought we could lose him but from there Lucas started to get better. There is no cure for the condition yet but the medication certainly helps him.’’

Lucas still suffers from seizures and he will have to take medication for life. A proper little fighter, he started at Chatterboxes Nursery in Basnett Street this year, which he loves.

Jenna, who gave up her job as an optical dispenser at Specsavers to become Lucas’ full time carer, said: “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.’’

Jenna, who looks after her son with help from his dad, Jack Robinson, and her parents, Ian and Celia Stanworth, said: “After a seizure Lucas always seems to pull round and recover fully but many sufferers regress and lose their memory or ability to do something. But Lucas 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.’’

To highlight the condition and also raise money for resarch into the condition Jenna has organised a family fun night on Friday, February 7th. The venue is The Loft in Burnley and there will be a DJ, raffle, children’s entertainer and indoor bouncy castle. Children are free and tickets for those aged 16 and over are £2.50. Half the money raised will be donated to the AHC Foundation, a voluntary non profit organisation established to support children with the condition and their parents. The foundation supports resarch, raises funds and puts families in touch with each other to share their experiences. The other half will be presented to the Dyspraxia Foundation as Jenna’s friend, Gemma Spencer, is helping her to organise the night. Her son, Kai, who is six, has just been diagnosed with the condition that impairs speech and movement. Kai is a pupil at Brunshaw Primary School and he has a brother and sister, Harley (three) and one-year-old Allyssa.

If you would like tickets for the fund-raising event please ring Jenna on 07990 0770591 or email her at jenna2012@hotmail.co.uk.

 

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