Petra Roberts
Petra's 13,000ft Skydive at Beccles Airfield
Fundraising for CHARGE Family Support Group
Story
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I am going to do a tandem skydive from 13,000ft (2 miles up in the sky!) to raise money and awareness of the condition CHARGE syndrome.
I only became aware of it when my neighbour's little girl Eva was born with it. Due to the syndrome she was born deaf and blind, needs an artificial breathing tube, is tube fed, and has various other life long disabilities. Seeing them cope and deal with everything made me realise how lucky I am my children don't have medical problems. They are my inspiration in doing this. Although deep down it must be so hard for them they are strong to everyone in person and have such love and closeness for Eva and each other.
The CHARGE syndrome charity have been a great support to Eva's parents. They are a very small charity so I want to help them further.
I've never done anything like this before. Please help me and give generously if you can.
ABOUT CHARGE SYNDROME
CHARGE syndrome is an extremely complex genetic syndrome which affects one in every 9-10,000 births worldwide. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
ABOUT THE CHARITY I AM RAISING MONEY FOR
The CHARGE Family Support Group is the UK’s registered charity for people with CHARGE Syndrome and their families. The group is run completely by volunteers including people with CHARGE, parents and grandparents as well as professionals with a particular interest in the condition. The group’s aim is to create a positive, supportive network of individuals, parents, families and professionals to share ideas, experiences, information and give vital support. Please consider supporting our charity to help children with CHARGE syndrome.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.