
Braver for Riley
BRAVER exists to serve a larger cause that goes beyond personal interests. Riley was a little girl living with MLD, a rare terminal disease who passed away on August 20th, 2024. We will continue to raise money for her family as they navigate learning to live with the grief of the passing of their Riley.
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More about Riley

About Riley
Riley was a precious girl, full of life, who passed away on 20 August 2024. She had MLD, a rare terminal, neurodegenerative disease.
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A short explanation of metachromatic leukodystrophy
MLD impairs the growth or development of the myelin sheath - the fatty covering that acts as an insulator around nerve fibers. Think of it as stripping all the plastic covering of all the wires in your house. These wires, or the nerves, are then exposed and become continuously damaged over time.
A brief explanation of the genetic aspect
We all have 20 000+ genes. Our genes are made up of two parts (one from each of our parents). Each of us is a carrier for normally about 5 genetic mutations/diseases (which means one half is faulty and the other if fine). Riley's dad and I happen to both have the same gene affected (the ARSA gene) - we did not know this before. Even then, Riley only had a 1 in 4 chance of being affected (she needs both faulty copies from us).
As a side note - if any of you are nervous about having children after reading this - I wish we had known about the technology available and access to genetic testing beforehand. Although they may not have picked up on this very unusual affected gene, genetic screening really should be a lot more common practice than it currently is, to help limit the occurrence of rare diseases. Rare Diseases SA explain that although each disease is very rare on its own, if you consider that there are more than 7000 rare diseases, South African children have a 1 in 15 chance of being affected by one!
Collection: Braver for Riley
Riley was a precious girl, full of life, who passed away on 20 August 2024. She had MLD, a rare terminal, neurodegenerative disease.
This campaign "Braver for Riley" was to help with the medical bills her parents needed that went beyond what medical aid could provide, and to give her as much comfort as they would in her last days.
We will continue to run the campaign for Riley's family and proceeds from all items in this collection will continue to go to her dear family in this time of grief.