- Date published: 27 Feb 2020 by Clare Youings
Two families that we support in Essex will be celebrating very special leap year birthdays this weekend.
Skye, who has a rare genetic metabolic illness, will turn eight this weekend - defying all the odds of her diagnosis. Mum, Vicki, will be inviting family and friends to their home to celebrate. She says:
“Doctors told us that children like Skye live for three or four years and she’s about to turn eight. She’s a fighter and has defied the odds.”
Skye was diagnosed with the illness when she was 16 months old and is tube-fed, non-verbal and unable to sit up unaided. She likes to move across the floor by shuffling on her back and enjoys music.
Rainbow Trust Family Support Worker Abi has supported the family for about three years, predominantly helping Skye’s brothers - 5-year-old brother Harrison and 7-month-old Max. Vicki also said:
“The most important thing Abi has done for us is the one to one support she gives Harrison. Rainbow Trust are the only people who really help siblings and the wider family. Harrison has a special relationship with Abi and that makes such a difference. Without charities like Rainbow Trust, children like Harrison can feel left out. Abi makes him feel special. She’ll scoop him up and give him attention.”
Leah, whose family are also supported by Abi, will be celebrating turning 8 this weekend too. Leah has a rare metabolic disorder, which has caused a heart condition. She is unable to speak, is tube-fed and relies on her family to care for her night and day.
Leah is severely disabled and is in a wheelchair and although she won’t understand that this birthday is an extra special one, she will enjoy being surrounded by family, cake, decorations and Mickey Mouse balloons. Mum, Emma, said:
“Abi is amazing. As soon as I know she’s coming I relax. She takes care of the whole family and all the children love her. She really helps with Leah's sister Georgia who can be quite hard work and needs to be watched constantly. My husband and I feel comfortable having Abi in our home. I look forward to her visits and we would be lost without her and Rainbow Trust.”
It is because of the difference we have made to these families that both Vicki and Emma are encouraging others to support The Big Leap, which calls on the public to help Rainbow Trust fund the extra leap year day by donating or fundraising and sharing the appeal on social media.
Oonagh Goodman, Director of Fundraising and Marketing, said:
“We are very grateful to families like Emma's and Vicki’s for backing The Big Leap. Our care to seriously ill children and their families costs £8,709 per day to provide and, in a Leap Year, we need to fund the extra day.
“I would like to join them and ask you to get involved with The Big Leap and use your extra day to help us fundraise, or simply donate. Just £26 is enough to pay for an hour’s practical and emotional support to a family with a seriously ill child, helping them make the most of precious time. With your help, we can reach out to more families.”
Support the Big Leap by using your extra day this Leap Year to fundraise for us. Alternatively, you can wish Skye and Leah a very happy birthday by donating just £5 today.