A little girl was diagnosed with a rare condition just weeks into her life after her parents noticed a lump on her head. Alvina Fitzpatrick was initially told it would fix itself by the time little Lyra was five years old.
But Alvina and her partner Steven Sheldrick, an engineer, began to see that Lyra wouldn't look to her left as the lump got worse. It eventually led to a diagnosis of plagiocephaly, also known as flat head syndrome.
It is a rare disorder that affects the skull, making a baby's head appear flattened, reports YorkshireLive.
“She was born four weeks early,” Alvina, a mum of three from Bridlington, said. “We noticed when she was six weeks old, but it must’ve been before that she was getting a lump at the back of her head. We were told it was plagiocephaly, that it was just something that fixes itself by the time she’s five. It gradually got worse until she couldn't turn her head to her left when she was laying on the floor.
“At first everything seemed fine at first, but we noticed she favoured facing her right hand side. She never looked to the left, she started using her hands but she was always using her right hand. It's like she doesn’t notice her left hand.”
The family didn’t have any awareness of what the condition was and they’re hoping by sharing Lyra’s story people can learn more about it. Lyra is currently on a waiting list to get treatment for the condition and they are also getting her a helmet that will help to reshape her head, as she is on the severe end of the scale.
They have managed to get a deposit for the £2,000 helmet, which she will wear 23 hours a day for four to six months. It will be fitted in Leeds every two weeks as they try to get her head shape back to normal. The family had her first appointment for the helmet on October 26.
“We noticed quite quickly,” teaching assistant Alvina continued. “I think a few weeks when you look at your baby, you see nothing but perfection, you don't think her head is a funny shape. We were trying to not believe it for a few weeks.
“We've now got a sleep curve mattress. It has a dip in the middle so her head can be in the inside instead of being flat and it makes her a lot more comfortable.”
On a GoFundme page for her treatment, they wrote: “The back of her head has a flat side and a bulge on the other side and her ears are misaligned. I fear it is also going to affect her development, as since she has started using her hands she is mostly using only her right hand.
“She also struggles to look to the left when laid down. It seems impossible for her as she can't get past the lump on the back of her head and I fear her neck muscles are not developing equally.”
If you would like to find out more about Lyra’s journey or donate to her GoFundMe page, click here.
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