Published: 09:47, 06 August 2019
| Updated: 10:15, 06 August 2019
Just one day after little Alfie Gilmour was born, doctors started to notice that he was different to other babies.
They realised his eyes were wide apart, his nose was flat and he had a high forehead.
Six weeks later he was diagnosed with Pallister-Killian syndrome – a rare disorder that affects children’s muscle tone and leads to intellectual disabilities, distinctive facial features and uneven hair growth.
Our reporter spoke to mum Heidi Griggs with Alfie
His mum Heidi Griggs says there are just 34 others with the condition in the UK - and Alfie is the only one in Kent.
“I’d never heard of it before and neither had the doctors. They Googled it beforehand and printed off information about it for me,” Ms Griggs said.
“I carry around a sheet when I see his consultants at the hospital, so I can say, ‘if you haven’t heard of it, this is what it is’.
“It wasn’t nice hearing the diagnosis – when you have a baby you don’t expect to be told these things.”
Due to his condition, Alfie struggles to develop muscle, which means he is unable to hold his head up, roll over or crawl.
He is also visually impaired, has a hole in his heart and doctors have told Ms Griggs the 11-month-old will not be able to walk, sit or stand unaided.
“It’s heartbreaking because every week at his physio group the other babies are able to sit,” the mother of three continued.
“Because he’s got no muscle tone, he gets hernias and he gets severely constipated.
“He’s not allowed to have any fluid orally. Drinks and medicine have to go through a tube because he was getting chest infections from water going onto his lungs rather than his stomach.”
While the condition is not expected to shorten Alfie’s life, Ms Griggs believes he will always be reliant on his parents.
The Broomfield boy also has global developmental delay – which prevents him from reaching childhood milestones as quickly as others.
“He won’t be able to go to a mainstream school. He’ll go to one that’s more suited to him,” added the 40-year-old.
“We get the odd smile here and there, but we can go a few days without one.
“But he’s got a massive personality, is very placid and content. He’s brought a lot of love and he’s loved by a lot of people.”
Ms Griggs has launched a GoFundMe page to raise £2,000 to for a specially designed buggy and car seat.
The rest of the money will go towards improvements to her home to make it wheelchair accessible.
“He doesn’t play with toys because he can’t hold them, so it would be fabulous to get him a sensory tent as well,” Ms Griggs added.
“Lights get a massive reaction out of him that you don’t get from anything else.
“It seems as soon as you try to get anything for disabled children loads of zeroes are added to the cost.”
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More by this authorJack Dyson