Little Amelia Newlands was born with kidney problems, then at 18 months she was diagnosed with the rare Phelan McDermid Syndrome.
The condition, caused by a missing chromosome, is similar to autism and means she can’t walk or talk, can’t feed or dress herself, and requires round the clock care from her dedicated parents.
However she is a beautiful and happy little soul who loves watching Finding Nemo and her parents are keen to help her develop to her maximum potential.
That’s why Amelia’s dad Kris (32), is preparing to throw himself off a 150 foot crane over Clydebank in just over a week’s time in a daring bungee jump, while her uncle, Scott (36), is running, cycling and kayaking over 100 miles in the Highlands the same weekend.
Amelia’s brother Josh (8) and his cousin Caitlyn (11) are also planning a fun run to boost the family fundraising total and buy vital equipment, including a special travel cot, which will enable the close-knit family to attend a special conference in the USA next year to find out as much information as they can about the syndrome affecting their daughter.
Jenni (31), Amelia’s mum, knew her daughter had kidney problems before she was born, and she has undergone two operations on the vital organs to allow them to function to their full potential.
However, as she grew, quicker than most babies (another of the symptoms of the condition), her mum instinctively knew she was not developing in the same way her brother had.
“I knew there was something not right, and I kept pestering the health visitors at her checks, but they just told me not to worry and that every child develops at a different rate. But when I saw two junior doctors at the hospital who had kids the same age, they realised there was a problem and she was sent to see a consultant and diagnosed with Phelan McDermid Syndrome.
“They don’t know how she will develop, we will just have to wait and see. Through an online group we have met up with two other families who have children with the syndrome and they are vastly different in their development.”
Kris, a press operator with Havelock at Mitchelston in Kirkcaldy added: “We just want her to live to her full potential and that’s why I am doing this. I am terrified at the thought of it, but I know I can do it for Amelia.”