Please take a moment to read about our fundraising efforts for little Lexi. Lexi lives locally and has been diagnosed with a life limiting illness known as Krabbe’s Disease. Lexi’s Grandma Su is a local resident, member of our Facebook group and worked locally at the Simply Food and Drink store at the end of South Road until it closed. This is something Lexi’s mum has written explaining Lexi’s condition and telling her story. Lexi’s family want to fundraise to help Lexi experience life in every way she can in the short time she will have but also, despite what they are going through as a family, they want to raise awareness of this condition in order to help others.
Lexi started with a delay about 6 months old, she had poor head control and couldn’t sit unaided.
She has awful reflux and has been on lots of medicines for that from being tiny, we’ve been to lots of appointments to try and find out what the problem was. Reflux wise we went for a Barium swallow to see if all was okay, that all came back clear. She was referred to physio as she still couldn’t sit unaided, we were told lots of things; maybe a global development delay, maybe autism (her older brother is diagnosed asd).
This went on for a long time until Lexi started flicking her eyes upward almost like rolling her eyes, she was sent for an mri of her brain and spine, and then blood tests for genetic testing.
She was being tested for Rett syndrome, Battens disease and Tuberous Sclerosis.
When we went to her results it was a week before Christmas and we were told it was actually none of those things and that Lexi was incredibly low in something called a GALC enzyme, which is an indicator of something called Krabbe disease.
By this time Lexi was due to turn 2 in the following February, and the life expectancy for this disease is two years old.
In March of this year Lexi was officially diagnosed with Krabbe disease, this condition destroys the protective coating around nerve cells, which leads to their destruction.
Lexi still hasn’t mastered sitting, crawling or walking but this doesn’t stop her!
She is the most beautiful happy little ray of sunshine, she’s got a cracking sense of humour, always laughing when her brother and sister are getting told off! She’s my little fighter defying the odds of this disease everyday, everyday is a blessing and we need to make sure we make every single day as special as possible.
We are going to be doing some fundraising for little Lexi to make sure we are able to find any specialist equipment she may need to make her life easier and happier, and any days out or experiences that the princess goes on, it’s important we show her as much as possible!
If any BCA businesses would like to donate a raffle prize to one of Lexi’s fundraisers please could you get in touch with Suwyer@icloud.com or firstname.lastname@example.org and please see below for the details of Lexi’s Crowdfunder.