A Leyland mum is jumping out of a plane in a bid to raise awareness of the disease which killed her 16-month-old son.
Kim Robinson’s son Frankie suffered from a rare neurological disorder which meant he struggled to lift his head and couldn’t be cuddled because it would cause him so much pain.
Little Frankie lost his battle with Krabbe Leukodystophy at the start of this year, but mum Kim says she is determined to keep his memory alive and raise money for the charities which helped him through his short life.
She said: “I don’t know how this all came about but I’m sure Frankie will be watching over me on the day.”
The parachute jump has been arranged by Kim’s friend, Kara Sennett, and will see over 30 people do tandem jumps near Swindon on April 11.
Kara arranged the fundraiser after being touched by little Frankie’s story.
The youngster was diagnosed with the condition when he was just three months old after his parents, Kim and Sean Forgione, noticed he was starting to regress in skills such as the ability to smile.
Experts eventually found that little Frankie’s problems had been caused by a gene that both his mum and dad carried. The problem arises when two carriers have a baby - as in Frankie’s case. It only affects one in every 100,000 people.
Just a few months later and the brave boy was unable to lift his head, his eyesight was deteriorating, and he had to be fed through a tube in his nose. He sadly died in January at just 16 months old.
Kim said: “We still really miss Frankie of course. I just want to give a little bit back and hopefully this will keep his memory alive.
“It’s a once-in-a-lifetime opportunity and I’m doing it for Frankie. I’m not nervous yet but on the day I’m sure it will kick in. I’ve somehow been volunteered to be the first one out too!”
Kim will be raising money for Derian House, as well as the charity Save Babies Through Screening.
She said: “If Frankie had been screened for the condition when I was pregnant then we would have known what to expect and could have thought about things like a stem cell transplant.
“But by the time we found out it was too late.
“If we can raise awareness and make sure screening for the disease happens then we could push for a cure to be found.
“I’ve come into contact with a lot of other mums like me through Frankie’s condition and I’m sure all the babies will be watching over me on the day.”
Kim’s friend Kara is a Lance Corporal in the army and is currently serving with 29 Regiment Royal Logistic Corps in Gloucester.
The regiment has a Sliver Stas parachute team, who are helping to organise the event.
Kim said: “Some people who are doing the jump are terrified of flying so it’s a big step for a lot of people. I think it will be brilliant and I’m going tandem so it’s not as if I will be on my own.
“Until you need a charity you don’t think about helping them but after what happened you really realise the good work they do.”
To learn more about the jump or donate to Save Babies Through Screening or Derian House, visit www.justgiving.com/kara-sennett and www.justgiving.com/kara-sennett0