Dementia: a term used to describe the loss of memory and motor function of the elderly, yet 8 year old Haidyn Grace Fowler and her family have had first hand experience. At a young age Haidyn Fowler was diagnosed with sanfilippo syndrome.
8-yearoldd Haidyn Grace from her mother’s Facebook page
Sanfilippo syndrome, also called childhood dementia, is a terminal illness, caused by a genetic mutation. It is extremely rare with only 1 in every 700 000 born with it. It causes a defect in the enzymes needed to break down heparan sulfate which will then cause build up and prohibit the cells from working properly which then causes breakdowns in vital organs. Those with Sanfilippo Syndrome have a life expectancy of 12-20 years
Haidyn was initially diagnosed with Autism when she was three, but her mother, Carrie Fowler, saw different symptoms and predicted that Sanfilippo Syndrome was in the future for her daughter. Two years later at age 5 Haidyn was diagnosed with Sanfilippo Syndrome. Since the diagnosis, Haidyn has lost her ability to walk, control her bladder, and has lost the ability to communicate with her family. It has been emotionally and physically taxing for her parents to take care of her and to watch as the little girl who used to laugh and call for her mama and dada struggle to string letters together to form a word.
Through this difficult time, as her parents had to endure the pain of watching their child deteriorate into a shell of her former self, they started various social media pages documenting their and Haidyn’s life. Through these platforms, Carrie was able to find some comfort in knowing that she was spreading awareness about the rare disease inflicted on her daughter as well as knowing her family was in the thoughts and prayers of so many of Haidyn’s followers.
This event was unique because they promoted donating to their fundraiser for their daughter with Sanfilippo Syndrome with something that was not traditional for a fundraiser. While may choose to do something flashy with bright colors and flamboyant additives that present their cause. The event organized by Haidyn Fowler’s family went at their goal of raising awareness and funds towards Sanfilippo syndrome in a unique way with a motorcycle ride.
On September 9 2023, Hayden's family organized a fundraiser through facebook called “Haidyn’s Hope Motorcycle Ride”. During this event, participants were invited to ride their cars and bikes while a variety of vendors sold their goods. All proceeds went towards Haidyn and her family and for research to find a cure to Sanfilippo Syndrome. This event, started in 2019, has become an annual event in their home town. The goal of the event was to raise awareness and money for Haidyn and her family as well as fund for a possible cure for Sanfilippo syndrome.
Flier for “Haidyn’s Hope Motorcycle Ride” from Instagram
This fundraiser was an important event for all families that have had an experience with Sanfilippo Syndrome. It allowed families that have children with it to seek some comradery and support in the hardships that they face with having a child with a terminal illness. This event as well as Haidyn’s social media presence brought awareness to this rare disease which could prevent misdiagnosis such as Haidyn had at age 3 when she was mistakenly diagnosed with Autism. Through this event, Haidyn and her family were able to raise $4000 for research to find a cure for Sanfilippo Syndrome. With her prognosis, Haidyn’s health is slowly deteriorating. The goal with Hayden's hope motorcycle ride is that it will save future little kids like her from enduring the same fate. Though much of the money raised went towards finding a cure for Sanfilippo Syndrome, what was unique about this event is that some of the money also went towards the Fowler family in financial support to the multiple financial hits that having a child with Sanfilippo Syndrome would cause such as for physical therapy, new apparatuses to aid her in everyday tasks that would soon become to difficult to do. This is unique because many times families of ill children are too proud to ask for help when it is offered and would rather gain money for finding a cure, but the Fowler family was able to do both, support themselves and aid in finding a cure.
This event was unique because it exemplified the unpredictability and rigidity of the disease. Unlike other diseases, it has very little predictability with the life course as it causes the body to slowly be poisoned. With motorcycles and street vendors as well as a car show and free beer to participants of legal drinking age. The event was truly a statement to the spontaneity of life and how life should not be about large flashy events but rather living what time you have left of your life enjoying similar things in life like a motorcycle ride.
Haidyn and her friends who also have Sanfilippo Syndrome from Instagram