‘We have no idea if he is going to be able to walk or talk’ - Bognor Regis mum talks about her baby boy’s rare disorder
Elijah Clayton’s parents don’t know if their gorgeous baby boy will ever walk or talk or if he will survive beyond the age of two.
For Elijah has an extremely rare congenital disorder - one of only around 900 cases in the world.
The 11 month old has PMM2-CDG1a which is characterised by feeding problems, developmental delay and episodes of internal organ failure, to name just a few.
His mum Sophie, 32, of Southwark Walk, Aldwick, said Elijah stopped gaining wright at about four months and after moving from breastfeeding to formula with no results, St Richard’s Hospital quite quickly thought it might be CDG.
Blood tests on Elijah, Sophie and her husband Matt led to a diagnosis.
“We started to look it up online but it was so sad we had to stop,” said Sophie. “So many children had passed away from it.”
But she did manage to join a CDG support group on Facebook and contact others affected by the disorder.
“Everyone has been so helpful and amazing,” she said.
She has also been a panellist on a CDG world conference this week which she said was really helpful.
Elijah and Sophie have just returned from eight weeks at the Evelina Children’s Hospital in London where he underwent six operations to drain fluid from around his heart and to try to find a way to stop him vomiting when food reaches his stomach.
Both of them had Covid and hospital restrictions kept the family apart during that time.
Sophie said Elijah is classed as ‘infantile catastrophic’ which means it will be a struggle for him to get to the age of two.
“He keeps throwing different issues at the doctors for them to cope with,” she said.
“It’s going to be pretty much like this for the rest of his life.
“We have no idea if he is going to be able to talk or walk. We just have to deal with whatever comes.
“We have to be careful with germs and illness around him. As soon as he gets a cold his albumen levels drop and a temperature makes him prone to strokes and seizures.
“We have to go to hospital just for a temperature.
“I have a son Reuben, aged five, at school, and another, Isaac, aged two, at nursery bringing back everything under the sun.”
Sophie works as a carer for Guardian Angels but is on extended leave at the moment and said life is hard on the whole family.
“On his own Elijah takes up so much time. I’m not earning anything and our mortgage is behind. We’re waiting for information on whether we can get carers allowance.”
Sophie’s mum Jilly Styles, from Chichester, set up a GoFundMe page and said there has been ‘an amazing response so far from friends, relatives, people as far afield as the Falkland Islands’.
The Co-op at Wittering, where Elijah’s other grandmother is postmistress, raised more than £2,500 over two Saturday fun days.
“Sophie and Matt need as much support as they can to help not only with specialist toys and equipment but also to raise awareness about his condition,” she said.
“As Elijah gets older he will require specialised equipment to help him, modifications to the family home as well as sensory toys and a specially adapted wheelchair which will cost around £6,000.
“In spite of all that he has been through, this little miracle still manages to smile at everyone who meets him and is adored by all his family.”
Sophie thanked Dr Brennan for such a fast diagnosis and excellent care, Christina Bassadone, owner of Guardian Angels for her understanding and regular contact to see how they are all doing and Samantha Massey for arranging fundraising at the Co-op in Wittering for him and raising nearly £3.000 and her mum for all her support.
If you want to help go to https://gofund.me/426d5ca3