There’s no one in the world like Elijah … quite literally.
The 23-month-old is the only person in the world born with five copies of one section of chromosome 2.
There’s no cure, no precedent and the Neilson family don’t know what to expect. But Elijah is determined to soldier on.
Mum Jennifer says that despite Elijah’s development being that of a 10-month-old, the Eynesbury toddler has been showing remarkable improvements.
“We’ve got no cases to compare it to, nothing to go on, or what his development’s going to be like,” Ms Neilson said of Elijah’s situation.
“But he’s trying to crawl, he’s learning Makaton sign language – he’s just started to pick up a few words in the past three weeks – and just in the last couple of weeks he’s started to eat pureed food. He was surviving on formula and it was very emotionally taxing and frustrating at times.”
The family of five is “really excited” about finally being able to communicate with the little boy and take him to restaurants with them.
“It’s a sigh of relief; we know there’s a light at the end of the tunnel because we can never have any clue about what to expect,” Ms Neilson said.
And though it’s been a whirlwind journey, Elijah has been the rock of the family.
“It was all of a bit shock [when Elijah was born], but he’s taught me a lot,” Ms Neilson said.
“He developed food allergies when he was very young and now I’ve learned all about food, eating and allergies. And he’s taught me a lot about life.”
The Neilsons’ extended family and friends have been supportive, but none of them has a child with a disability. And it was that fact that planted the seed for a new idea – a support group for mothers who have a child with a disability.
“Unless you’re in that situation, you can never really understand the journeys of ours,” Ms Neilson said. “Mothers with children who have special needs just understand each other and know how hard it is.”
Ms Neilson is hoping to meet other mums for “play dates” and says she is open to any suggestions. To be involved, email neilsonj@live.com
