Leicestershire mother takes on skydive for Rainbows
A mother whose son was diagnosed with a rare life-limiting condition at the same time she was battling breast cancer is braving a daredevil challenge to raise money for Rainbows.
On August 26, Charlotte Edwards, of Oadby, will take on our Skydive, freefalling 10,000ft at speeds of up to 120mph. She hopes to raise funds for our charity, which she says she couldn’t cope without.
“Albie’s diagnosis came at the age of two,” said Charlotte. “Albie was born very poorly. Nothing was picked up on scans so I was very taken back. He was born having seizures straight away and also had issues with his feet.
“But nothing stood out and he spent his first year of life in and out of hospital having countless, unsuccessful operations and tests. Then a month before his first birthday, I was diagnosed with an aggressive breast cancer and everything with Albie was put to one side, for about six months, while I tried to get through my own treatment.
“We eventually saw a new genetic consultant who begged us to let him do one more test on Albie. We were very hesitant because by this stage we just wanted to enjoy him and I was at a point where I couldn’t face more hospital appointments, not just for him but me as well. But he was confident he knew what Albie had, but needed to confirm this.
“Two weeks later I was hit with the news that Albie had Dravet syndrome. I was basically told to just enjoy my time with him as he wouldn’t have a long life expectancy. Something no mother wishes to hear. This was on top of Albie having other health issues that have massively impacted him overall.”
Albie, who is now eight, is unable to talk, sit, walk or use his hands and arms. He can’t do anything for himself and requires round the clock care seven days a week.
“However, he is the happiest and most loved little boy you could ever meet. I can’t begin to explain how much, as a mum, it breaks my heart knowing there is nothing that can be done to help him,” said Charlotte. “He’s an absolute delight and my world.
“Every day is tough both emotionally and physically. Being the mum to a severely disabled child is, at times, extremely lonely and scary. However, I’m so lucky that Albie gets to attend the incredible Rainbows. This place is a happy place to him and our family. His 14-year-old brother, Charlie, and six-year-old step sister, Eloise, also love it there and they love Albie so much.
“The hospice allows me to get a few days respite where I don’t need to worry that his level of care and needs are not being met. Not only do they care for him but the support they give to us is incredible and I honestly could not cope without them. I desperately want to give something back, not just for my son but for all those families whose children also attend the hospice and sadly to the families who may, at some point, become part of the hospice family.”
Charlotte is really excited about the Skydive, which has been on her Bucket List and she is ticking it off now she is seven years in remission. She will be cheered on by her proud partner, Anthony.
“To do the Rainbows Skydive and raise money for something that is so close to my heart is a very rewarding experience,” Charlotte added. “I’m a bit of a thrill seeker and can’t wait. I know I’m doing it to raise money for an incredible cause so that makes me more excited. I’m sure on the day I’ll be terrified.”
Clare Hoggan, Rainbows Events Fundraiser, said: “Thank you so much to Charlotte for taking on this amazing challenge. At Rainbows, we rely on fundraising so we can support children like Albie and his family whenever they need us.”