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Brinley is a vibrant, beautiful, unique, funny, special 8 year old girl. This March, she was diagnosed with a devastating condition called Sanfilippo Syndrome. It’s also known as “Childhood Dementia“. A very rare disease that stems from a single change in one of her genes, which prevents her body from breaking down toxins. The toxins build up over time, and her brain and body will deteriorate. It has the ability to steal her speech, her ability to walk, feed herself, even her hearing and eye sight. Sadly, life expectancy is anywhere between 10-20 years currently. We’re not losing hope and we will continue to fight for Brinley. We need a cure for this awful condition and there isn’t one yet. Our hope is that we can enroll Brinley in any clinical trials or treatments (ie- gene therapy, injections) that become available. There will be many medical costs that are associated with giving her the best quality of life, such as: home modifications, medical equipment (ambulatory), different therapies, travelling to out of town appointments, medications and vitamins, etc. pAnything helps along the way on our road to a cure for Brinley and others, even a share. Thank you so much for taking the time to read this.
Organisator
Kevin Rochholz
Organisator
Brantford, ON