Caring for a disabled child is challenging at the best of times, but living without a definite diagnosis can sometimes make the situation all the more daunting, as VICKY ROBSON discovers.
The couple have been told there is a one in four chance any children they may have in the future would also have the same condition, although tests suggest it is not genetic.
Marina added: “Mya has the brain of a three-year-old, so she wants to do what other three-year-olds do, but we have to sit with her and help her physically pick things up.
“She’s lovely. She shows you how she feels in different ways and has just started clapping her hands together to say ‘yes’. She has her own little personality. She just wants to play all of the time, so gets frustrated.
“At the moment I just can’t carry her around with me. I have a seven-year-old niece who is heavier than Mya, but easier to carry.
“Once I bring her down the stairs in the morning we are pretty much stuck in the living room. Even trying to go to the bathroom when I’m in the house by myself is difficult. We need to make adaptations to the home so Mya won’t be confined to just one room.”
Shaun and Marina have recently been approved for a grant of £27,000 from Northumberland County Council to help towards the cost of equipping and extending their home, but are on a waiting list for the funds.
“There is a good chance that Mya is probably the only child in the world who has been born with this, so it is very lonely. It would be nice to have just a little bit of support, or talk to someone else who knows something about Mya’s condition, but we don’t know anyone.
“It’s hard seeing other children running around and smiling, because Mya can’t smile. We will never see her smile. But she smiles with her eyes. You just have to get on with it. She is such a pleasure to have. She is a little angel.
“Even the professionals can’t tell us much about it and I think it’s a learning curve for them. In a way, you want to know what her future is going to hold, but in another way, you just want to wait and see,” says Marina.