Sunderland toddler fighting for survival needs help for new drug trial

Two year - old Jack Baird of Ryhope, who suffers from a rare genetic disorder which could see him develop dementia before the age of five.  He is seen here with mum Gemma Nelson, Dad Garry Watson and his nine - year old brother Lewis Baird.
Two year - old Jack Baird of Ryhope, who suffers from a rare genetic disorder which could see him develop dementia before the age of five. He is seen here with mum Gemma Nelson, Dad Garry Watson and his nine - year old brother Lewis Baird.
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TODDLER Jack Baird faces a fight for survival – and he needs YOUR help.

The two-year-old, from Ryhope, has the deadly Sanfilippino Syndrome 
which gradually destroys his brain function and physical ability.

Jack is not expected to live through his teens, but his loving family have found a glimmer of hope in a new drug trial.

Along with 19 other children, Jack has been selected to take part in the trial at Manchester Children’s Hospital, but they need to raise £580,000 to fund the treatment.

Mum Gemma Nelson, 29, of Ridgeway, aims to do all she can to save her youngest son’s life.

“I couldn’t process the information when Jack was diagnosed,” said the mum of two.

“We were told to basically enjoy him while we still had him.

“You can’t begin to take that in, it was like an out of body experience.

“We were told there was nothing they can do, that there were trials going on but that there was nothing that could be done for Jack in his lifetime.”

Jack, a Sunningdale Nursery pupil, is gradually deteriorating before his family’s eyes but they hope that the new drug may halt the tragic genetic disease’s progress.

Gemma, who is also mum to Lewis, eight, said: “Jack was diagnosed when he was 16-months-old but I knew there was something wrong with him before that because of the way he slept.

“He had bowel problems and his nose was always running. Doctors would fob us off and give us antibiotics. But then the health visitor noticed that his head was enlarged and he went for tests at Sunderland Royal.”

Test results were sent to specialists at Manchester Children’s Hospital who confirmed he had the rare condition which affects just one in 85,000 children.

Gemma, who is a full time carer for Jack, added: “I’ve always treated Jack like a normal little boy but he is in his own little world.

“He is happy doing his own thing, flicking through a book and he loves music and watching us on the Wii. He loves running too but he always falls over.

“As he enters the next stage of the disease he will be even more in his own world. We want to build a sensory room for him but the local authority say he doesn’t meet their criteria yet.”

Gemma, partner Garry Watson, 32, who is a pipe fitter with Amec, family and friends are hosting a number of fund-raising activities to help raise the amount needed for the trial including a sponsored skate and a car boot sale.

They are also hosting a Halloween party for children, at the Village Tavern in Ryhope from 5pm to 8pm on Halloween, and are looking for people to donate raffle prizes.

Gemma said: “We know it’s an absolutely mad sum of money, but this treatment is known to work and is literally ready now, it just needs to be clinically approved so it can be mass produced and made available to save hundreds of children’s lives around the world.

“Once the trial is carried out the treatment can be made available, at very little cost, for Jack and other children with this disease all over the world.”

*To donate to Jack’s cause visit www.shareagift.com/jack.

*To donate a raffle prize for Jack’s Halloween party contact Julie on Tel. 0788 4318 705.

Twitter: @sunechokaty