April 25, 2016
BENEFITING: National Tuberous Sclerosis Association Inc
EVENT DATE: Apr 18, 2016
My name is Jill Woodworth, I am and have been many things, but for one day this April, I will reach a life long goal of running in this year's Boston Marathon for the first time! Now I am actually entered, the race brings together my life long passion for running and the justification for spending hours daily away from my family while training, together with attempting to raise money for Tuberous Sclerosis Complex. Three of my five children have Tuberous Sclerosis Complex
From the day of Mary Ellen's diagnosis in the UMass Medical Center emergency room back in September of 1996 the course of my life and my priorities in life were almost immediately altered.
Tuberous Sclerosis Complex (TSC) is a is a genetic disorder characterized by the growth of numerous noncancerous (benign) tumors in many parts of the body. My kids started with infantile spasms, a very severe type of seizure, and progressed to many other manifestations of this condition throughout the course of their lives, including status epilepticus seizures, kidney embolizations, facial surgery, multiple medications daily, early intervention, IEPs, ketogenic diet, a team of specialists a mile long and plenty more that if you'd like to know exactly, you can contact me for more information.
To have one child affected by this condition is a life changer, but to have three with TSC might seem more than imaginable. This IS our life. It has brought us all, the kids, myself and their father, and multiple family members and friends, to the depths of despair as well as the peaks of gratitude for the amazing doctors and therapists who have crossed our paths and enriched our lives in so many ways. As well I have been able to witness the incredible strength and resilience of my amazing children.
I myself made some poor choices in my attempt to cope with the astronomical weight of constant stress of managing children with this disease, and found myself choosing alcohol more frequently as a coping mechanism. Thankfully, I was able to climb out of this hell and find more healthy ways to manage the ongoing challenges of caring for my children.
Throughout everything, running has been a constant. It has become a form of meditation and therapy for me during these trying years. Now, I have the opportunity to use what I consider a joy as a tool to give back to the research that has tangibly improved many lives, including ours. Truthfully, this is one of the most meaningful opportunities I have had and may ever have in my life!
TSC occurs in 1 of every 6000 newborns and affects 25,000 to 40,000 people in the United States, 1-2 million individuals worldwide. I feel so strongly that research will open doors for so many and has already has directly impacted my children with the FDA approval sirolimus, medications that slows down and even arrests the development of a type of kidney tumor, called a angiomyolipoma, that all three of the kids have.
Please join me in this fundraiser by passing this link to family and friends if you feel so called. Spreading awareness is huge. If you find it in your heart to contribute financially, that would be fantastic as well!!
email me at: email@example.com, website: www.wildflowerwrites.com