Meet Kelera, a brave 6 year old girl living with BPAN (Beta-Propeller Protein Associated Neurodegeneration. BPAN is an extremely rare and devastating disorder that will gradually take away her abilities, leading to severe physical and cognitive challenges. Life expectancy for those with BPAN is heartbreakingly short, often just 20-30 years.
Despite this diagnosis, Kelera is a ray of sunshine. If she's not skipping, she is smiling and her laughter is pure joy!
Kelera's parents are on a mission to raise awareness and connect with other families who share similar challenges.
The family are hoping to raise funds for a vital trip to a BPAN conference in the USA. The conference will bring together families and experts working to understand and find a cure for BPAN, and your support can make all the difference!
More information on BPAN can be found at
https://www.nbiadisorders.org/about-nbia/bpan.
Sorry we couldnāt get up to Tweed to do the Walk. Lots of love to you guys xx