Cara-Grace's quilt    (Quilt Closed)

Theme details

Bees and Sunflowers - Stitch from Lilo and Stitch on the label if possible

Child Interests

Cara-Grace loves lights and anything colourful. Because the symbol for NKH is a bee, we do have a lot of bees everywhere and sunflowers as she's my little ray of sunshine

Biography

My little girl Cara-Grace has been diagnosed with NKH which is a genetic metabolic disorder. I had the most picture perfect pregnancy, perfect labour but a few hours later I noticed something wasn't right. Cara-Grace cried once when born but had not cried since. Not for feeds nor changes nor anything but I was being brushed off by doctors saying everything is okay and as a new mom I shouldn't worry. But at 3 days old something just wasn't right. She refused to eat and was unresponsive and floppy so I called for an ambulance and we were brought to the hospital.

When we got there, we were admitted as her observations were really bad, very low on oxygen and not what they wanted from blood tests. She was put on an iv drip, had a NG tube put in for feeding, had so many different oxygen masks tried on to try and stabilise her oxygen levels. They ran sooo many different tests on my little girl as no one knew what was wrong. With all tests done, soon after (day8) we got diagnosed with this horrible disease. The doctors weren't giving her much of a chance and after 2 weeks we have been advised to take her off life support as she wasn't doing well and the machine breathing for her was just making her worse. So she was taken off the life support on the 17th day and we were told she will pass soon after. But 2 weeks later my little fighter was still alive, breathing on her own. We were told to take her home at almost 5 weeks old.

I'm scared of what's to come since she's defying all odds but with very little knowledge on this condition it's hard to know or plan or predict anything. There are only about 500 cases worldwide, so there is not enough research on this. Children with nonketotic hyperglycinaemia (NKH) have little chance of getting past infancy and if they do it's hard to say how long they will live, with most unfortunately passing before the age of 4.

My little girl gets daily seizures. She is very behind in her development. Doesn't sit up unaided, she doesn't eat orally and she most likely will never be able to. Her muscle tone is very weak so she can't hold her head up. She doesn't smile or laugh (really rarely does that happen) she is now almost 15 months

Patterns

Squares received

Card

Stitched by: Heather Jepson