Blainie (9) defies the odds in charity race
Register for free to read more of the latest local news. It's easy and will only take a moment.
In 2016, Blainie White (9) was diagnosed with a form of Batten disease which affects just eight people in the UK. It is a neurological condition which causes gradual loss of sight and movement, leaving the schoolgirl wheelchair-bound.
The condition also causes Blainie to suffer from epilepsy.
However, a team of dedicated family and friends have rallied round to raise money for specialist equipment which could transform her quality of life, and helped Blainie complete the Baxters River Ness 5KM race last Sunday.
Her proud dad Scott (30) said: “There was a full squad of us out doing the run and that was fantastic. It was really good for Blainie to be able to do it.
“She was really enjoying all the noise and the music. You would never have thought that she would be able to do it, but she did.
“We have raised nearly £700 just through doing the run, which is brilliant.”
The family are raising money for a flotation device which will allow Blainie to swim, as well as a robust wheelchair to help her enjoy the great outdoors.
“She just loves going in the pool,” Mr White said.
“However, it’s between £700 and £800 for a device.
“We are also looking at getting another wheelchair as well because we need one that’s a bit bigger for when she’s outside school.
“We are always out doing walks which is another reason we need a more robust wheelchair for her.
“Getting out and about in the fresh air is something she really enjoys, but it also helps with her condition because it tires her out.
“Sleep is so important because if she doesn’t get enough, that heightens the seizures.”
Blainie’s cause is also being championed by the Royal Bank of Scotland, where three relatives work.
The bank’s staff in Inverness have picked the Batten Disease Family Association as their chosen charity for next year.
“RBS have taken BDFA on as their charity of the year which is absolutely fantastic,” Mr White added.
“My partner Laura and her sister both work at the bank and her other sister is the manager so I just kept pestering them. Every year they have a charity they pick and for them to pick the BDFA is brilliant.
“Any money RBS raised will be doubled by the bank as well which is a huge bonus for us We are really grateful.”
Mr White says his daughter continues to inspire the family on a daily basis.
“She can’t walk or talk any more, but she is always laughing and giggling,” he said.
“She does get a lot out of life. She’s an inspiration to us all.”
- To donate to Blainie’s fund, visit justgiving.com/crowdfunding/littlebeesbattle
