Little Nathan Watson with mum Sarah
A NEWMAINS mum is bringing forward Christmas this year as she fears her terminally ill little boy won’t survive until December.
Sarah Watson has spoken of the daily pain she endures watching toddler Nathan’s condition gradually deteriorate before her eyes.
Nathan – who isn’t three until later this month – suffers from an incurable illness called Infantile Batten Disease.
It is a fatal, inherited disorder of the nervous system, caused by a gene mutation. The condition is relatively rare, only occurring in around one in every 50,000 children, but takes no mercy on its young victims and tragically means little Nathan is unlikely to live beyond the age of four.
However, Sarah has noticed a rapid deterioration in her son over recent months, with a marked increase in the number of painful seizures he has suffered.
Because of this, mum-of-four Sarah has decided to hold Christmas early this year for her children.
She told the Wishaw Press: “We’re looking to have Christmas in early October, the week after Nathan’s third birthday.
“It’s important for us to try and celebrate this event as a family while Nathan is still with us, and allow him some enjoyment that he may not otherwise experience.
“I have been told we will be able to get £250 from the Teddy Bear Foundation to help with our plans, which is fantastic.”
Infantile Batten Disease manifests itself through a noticeable lack of development in the child’s motor and mental capabilities, resulting in a regression of functions such as co-ordination and speech. The young sufferer also experiences a rapid deterioration in vision and is prone to painful seizures.
Although born premature, Nathan appeared to be a healthy baby.
Sarah (28) recalled: “I’d always wanted four kids, so when Nathan was born I was over the moon.
“At first everything went well, just as it had with the other children and he seemed to be thriving.
“However, just before Nathan’s first birthday I became a bit concerned about his lack of progress. He just wasn’t reaching his milestones. He struggled to sit up and was unable to hold onto his bottle.
“In addition I felt he had problems with his eyesight, he appeared cross-eyed and unable to focus.”
Sarah sought medical help and doctors eventually diagnosed Infantile Batten Disease.
Sarah became Nathan’s constant carer – while also being a full-time mother to her other kids Chloe (11), Damien (six) and Dylan (four).
Her sister Natalie, who lives nearby, and mum Theresa visit regularly and do their best to help out but readily admit that Nathan is a little boy who much prefers being around his mummy.
Doting Sarah is by her son’s side all day, every day – even sleeping in the same room to make his struggle as comfortable as possible.
She continued: “Nathan is on oxygen and is fed from a tube directly into his stomach because he is unable to swallow. This means that I need a suction device to remove saliva that builds up in and around his mouth. Because of this we both only sleep in naps.”
Sarah’s mum Theresa admitted: “It’s a terrible prognosis, truly awful. But we’re all very proud of Sarah. I don’t know how she copes.
“Even a recent fractured leg hasn’t held her back. She’s created a wonderful world for Nathan.
“He loves music and she’s made his bedroom into a little snooze area for him with fibre optic lighting and soothing music.”
Theresa continued: “We want to bring this to people’s attention to try to find out if there’s any resource out there that can assist or advise Sarah.
“Yorkhill Hospital and Robin’s House (children’s hospice) have been wonderful, but some more help and advice would be greatly appreciated.”
Nathan’s condition has worsened recently and Sarah fears a chest infection he’s had for more than two weeks could prove deadly.
She added: “I know that when the end comes for Nathan it’ll be through a seizure – he’s had 70 in the last year – or from a chest infection. That’s the pattern with Batten’s.
“Whatever happens I’ll always know that Nathan changed my life for the better. He’s my little knight in shining armour and I cherish every moment with him.
“He’s so precious, I just want to give him a lifetime’s love in the time he has left.”