Amelia is one and lives in Newark, England with her parents, Sian and Callum. Despite her young age, Amelia has complex medical needs and already has over twenty diagnoses.
Sian told us: “With Amelia, there’s often so much unknown. She has conditions which only affect one in a million babies. Her main condition is unbalanced translocations which is completely unique. It’s the only documented case in the world and it has led to Amelia being globally developmentally delayed.
“She also has microcephaly (which means a smaller head) and micrognathia (meaning a smaller jaw). As well as congenital glaucoma and Peter’s Anomaly, a very rare condition which means she’s blind in her left eye. At just five years old, she had open heart surgery, and has recently had hip surgery.”
“So much of our time is taken up with medical appointments and daily physiotherapy. Amelia has 15 different specialists. So, we have countless phone calls, visits to our house, and trips to the hospital.”
Family Fund Mobility Support
With Amelia’s medical needs, her family need to be able to take a lot of equipment wherever they go, including a ventilator, in case Amelia falls asleep.
Sian and Callum previously owned a car which was not big enough for the equipment Amelia needs. “The more equipment and the heavier Amelia was getting, the more difficult it was becoming with a three-door car and a small boot. It was really strenuous on my back too as I’m Amelia’s full-time carer and we have so many hospital appointments to get to.”
Family Fund was able to support Amelia’s family through the Mobility Support programme which provides families with a lease car: “It was absolutely amazing when I found out about the Family Fund Mobility Support programme. The process from applying to getting the car was under two weeks, start to finish. It was phenomenal.
“When we were in the hospital recently for three weeks, the car was so helpful as there was enough space to bring everything, we needed with us, so we didn’t have to keep travelling back and forth from home to the hospital. I was able to store clothes and nappies and things in there so I could just pop out and get what I needed. It has made life a lot easier.
“The car has also enabled us to do things we wouldn’t have been able to do before. We’ve been able to do trips and make special memories as a family which means so much to us.”
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