Lilly-Zoe's Run for Jouberts Syndrome
Organized by: Jennifer Denis
Update: LILLY-ZOE'S RUN FOR JOUBERTS SYNDROME
July 20, 2016
Event Name: Tough Mudder New England 2016
EVENT DATE Jun 18, 2016
Lilly-Zoe is my 15 month old granddaughter. She is pretty special, but what makes her particularly unique is a very rare condition she was born with called Joubert Syndrome. At 15 months Ms. Lilly is not crawling or walking. She is not able to sit on her own for long periods of time. In fact she just recently successfully sat on her own for just about a minute without losing her balance. She is very determined. The profile picture that her mom shares proudly shows that successful milestone.
This syndrome is a malformation of her cerebellum and this area of the brain controls her balance and coordination. She has low muscle tone and requires physical therapy frequently. It is likely that she will walk much later in life then most children and at this point we don't know the severity of what that looks like. Her mom is a devoted stay at home mom and this is her full time job.
On May 14, 2016 Ms. Lilly will be part of a 5K called the Mutt Strutt in our local town where she has been given the title MVP runner. You see, children under the age of 3 are free to attend this event that is benefiting our local Humane Society. however with the permission of the event director I asked if I could register Lilly as a runner with her own runners bib and her own runners chip so that when she crossed the finish line she could look back and know that she had people rooting for her and cheering on her every accomplishment from a very early start. Ms Lilly-Zoe is a registered one year old runner on the registration list. I will be pushing Ms. Lilly in a running stroller that day and we will be sporting her favorite color yellow to bring some awareness to this syndrome that is extremely rare.
I would like to create this fundraiser to help with future 5k's with my granddaughter so she can spread the word and bring some awareness to children who struggle everywhere with all sorts of illnesses and syndromes that it doesn't mean you can't participate and finish goals. Lets give Lilly and others the hope that they too will someday walk and perhaps enjoy running against all odds even if they can't. I call her my Lilly-Wings because she deserves to fly.