A YOUNG mum is trying to raise awareness of a condition that affects her son’s life.
Taylor Edwards, 22, found out that her son, Hunter-Wray, had a severe genetic condition when she was 25-weeks pregnant.
She was told that he would have no quality of life, and reach no development milestones, but the 19-month-old has been proving doctors wrong.
Ms Edwards said: “He’s proving all the doctors wrong, they’re surprised at how he’s getting on now.
“I was offered an abortion three times while I was pregnant but I just wouldn’t give up on him.
“He just gets on with it, and I wouldn’t have him any other way.”
Hunter-Wray has X-linked hydrocephalus, the most severe condition caused by L1CAM gene mutations.
The condition can only happen in boys, and affects the nervous system.
Hydrocephalus is a build-up of fluid on the brain, and cannot be cured, although symptoms can be controlled.
Hunter-Wray’s condition has left him severely brain damaged, and he has visual impairment, global development delay, and daily seizures.
He also relies on home oxygen and is tube fed four times a day, and struggles to hold his head up for long due to its weight.
Ms Edwards added: “I’m so so lucky he is here today after being told he wouldn’t make it, I am grateful for every second I have with my precious boy.
“I have so much support from Derian House children’s hospice and I really couldn’t thank them enough for everything they do for my little boy.”
“He has just started saying mama which melts my heart – people often tell me I’ve got my hands full with him and a seven-month-old little girl, but to be honest it’s the best thing ever and I couldn’t see my life any different.
“I’m so grateful for my beautiful children.”
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