The parents of a little boy - battling an undiagnosed disorder that contributed to his sister’s death - have launched a desperate appeal for specialist equipment which will make his life easier.
Liam Guest has already spent much of his short life in and out of hospital undergoing test after test to establish what the neurological problem is - making each day a constant fight for survival.
Since the turn of the year, Liam, aged 21 months, of Stanhope Road, South Shields, has only managed two-weeks at home with his family. The rest he has spent in the care of Newcastle’s Royal Victoria Infirmary.
His mam Claire Carty, 29, has kept a bedside vigil while his dad James Guest, 27, has been forced to give up his job as a window cleaner to care for Liam’s two older brothers - James, nine, and Ryan, four at home.
Tragically, the symptoms Liam is presenting are similar to those shown by Claire’s first born, Shannon, who died at the age of just three in 2010 as a result of the undiagnosed condition.
The family need help to buy a specialist pram and bed to help make Liam’s life easier
My older son James, he’s really upset about it all. He keeps saying he’s scared, and that he wants Liam to be normal and not to die like ShannonClaire Carty
The little boy has already been diagnosed with hypotonia, complex epilepsy and muscle spasms, is fed through a peg into his stomach and also needs access to a suction and oxygen machine.
That means whenever Claire wants to go out or attend hospital appointments, she needs a pram capable of carrying the equipment her son needs to survive and a bed which allows the equipment to be easily accessible.
She said: “It’s just test after test for him while they try and find out what’s wrong.
“It’s heartbreaking to see your little baby going through so much and being absolutely powerless to do anything.
“He is only 21-months-old and he has been through so much already. He’s been in hospital since New year’s Eve due to the increase in the seizures he’s having. He’s having at least one a day.”
She added: “It’s so upsetting for the family. My older son James is really upset about it all. He keeps saying he’s scared and that he wants Liam to be normal and not to die like Shannon.
“There’s just nothing we can do or say to him because nobody knows what the problem is.”
Claire added: “When Shannon died and I fell pregnant with Ryan I was paranoid but I was fine and, with being fine with James, I just thought it happened to girls.
“So when I was told I was having a boy, I just thought it wasn’t going to happen again.
“But things started to go wrong when he was two months old. He wasn’t holding his head up. Then he had a fit and it was put down to his injections. He had his next lot then the same thing happened again. At first they thought he had meningitis but now we are just left waiting until a test can diagnose him.”
As their son continues to undergo testing, the couple with the help of family and friends have launched a fundraising drive to raise at least £2,000 to help pay for a specialist pram and bed to help make life easier for the family and for their son.
Having the pram which would be able to store the equipment he needed, it would also mean, when he’s at home, he would be able to enjoy days out with his older brothers.
Claire said: “It would mean the absolute world to us all if we could find the money to pay for the pram and bed. It would help us so much, that we would be able to enjoy our time as a family with Liam so much more.”
A go fund me page has been set up to help raise the funds needed. To make a donation visit www.gofundme.com/fundraising-for-liam