Rallying round miracle baby Finley

A fundraiser is being organised for Finley Jackson from Thornton who suffers from DOOR syndrome
A fundraiser is being organised for Finley Jackson from Thornton who suffers from DOOR syndrome

MEET Finley the fighter.

Ten-month-old Finley Jackson suffers from a life-threatening genetic disorder which affects fewer than 50 people in the world.

He is lucky to be alive and had to be revived by doctors when he was born. He is now fighting Door syndrome.

Finley is one of only three people in the UK with the condition which results in the Thornton youngster suffering daily seizures.

His young parents Maddison McCluskey, 17, and Stephen Jackson, 18 believe it is a miracle he is even alive.

Mr Jackson said: “When he was born he wasn’t breathing and had to be resuscitated.

“That was one of the scariest moments of my life.

“Whatever problems he has, it could be worse – we might not have even had him now. It’s something that keeps us going.”

Finley suffers from epilepsy, a dilated kidney, deafness and has missing nails on his fingers and toes.

Finley’s devoted parents and family are now rallying round to ensure the poorly infant, who lives with his mum at his grandmother’s house, has all the care and love he needs.

Mr Jackson, from Poulton, who is juggling fatherhood with an engineering diploma at Blackpool and The Fylde College, said: “Finley’s been in hospital more or less every week and it took a long time for him to be diagnosed because it’s such a rare condition.

“It’s a fear it will affect his life expectancy, but we don’t like to dwell on it. We are waiting to see how it goes.

“It’s been difficult, but if he can smile through then we all can.

“He’s a really happy baby – he’s always laughing and smiling which is really nice.”

Door syndrome stands for Deafness due to a defect of the inner ear or auditory nerve; Onychodystrophy or malformation of the nails; Osteodystrophy which is malformation of bones and mild to profound mental Retardation

As it is so rare, a baffled medical profession is still carrying out research.

Finley’s parents are planning to meet with a genetic team who are based in Manchester next year in the hope they will give them answers about how the condition occurs and to discuss any possible treatment.

In the meantime doctors at Blenheim House, a child development and family support centre for children with neuro-disabilities on Newton Drive in Blackpool, have found a new steroid to reduce the number of seizures Finley has.

Dr Nigel Laycock, paediatric consultant, said: “It’s very rare indeed, there are 50 cases reported worldwide. We’ve never had a case like this in Blackpool, it’s a one-off.

“Finley has quite a severe condition. In some cases it’s a life threatening condition – we can’t predict whether it will be for Finley.

“Mum and dad are lovely and they are a very together family.

“They have had more to deal with than the average parent and they are very supportive towards Finley.

“He’s a bonny lad, when he’s well he’s very happy and smiley.”

Finley is also supported by Maddison’s parents Andrea and Paul McCluskey and Stephen’s parents Kathryn and Thomas Jackson.

Mrs McCluskey, 49, from Fleetwood Road North in Thornton, said: “He has about one seizure a day which lasts around half an hour. He just sleeps afterwards.

Local councillor Andrea Kay is raising money to provide a specialist alarmed cot and helmet for Finley – who needs the equipment as he requires constant monitoring – as part of her Christmas wish appeal for poorly children.

A successful fund-raising event was held last night to bring in much-needed cash.

Anyone wishing to donate can contact - on 07813 593821.