Why I Ride by Merideth Hentschel

WHY I RIDE

by: Merideth Hentschel

I want to tell you a little bit about why I am riding. I am riding for my ten-year-old nephew Jonathan and all those whose lives have been affected by NF. Jonathan’s mother Melissa is my oldest and best friend of 35 years, and to me that qualifies him as my nephew. Jonathan was diagnosed with neurofibromatosis type 1 (NF1) right before his third birthday. I had never heard of NF and didn’t know what that meant for Jonathan and his family. Since then I have learned a lot about NF and how many people are affected by this awful disorder.

For Melissa and her husband Mike it meant they were about to start the fight of their lives to find a cure for their son. Melissa and Mike dove into the NF community and immediately made a difference by raising money and awareness for NF. From 5K’s, to volunteering at any and all NF events, writing letters, lobbying in Washington for funding, riding hundreds of miles on bicycles, running marathons and putting together their own annual Committed to Curing NF fundraiser every November, they have taught me what real life superheroes look like. As a mother myself, I cannot fathom the fear and worry that comes along with having a child diagnosed with NF and what that feels like on a daily basis. The fear and pain of what it would be like to worry when my son has a headache if it is simply just a headache or the flu or if it was possibly another tumor growing in his head. The courage they have, and the love and dedication to their family and Jonathan inspires me. For that, I am riding.

For Jonathan, it has meant speech and occupational therapy two times a week, extra support in reading and social skills, and he is monitored regularly by an ophthalmologist and neurologist at Boston Children’s Hospital. Jonathan does not let NF slow him down despite the pain he feels on a daily basis caused by the tumors that grow all throughout his body and in his head. He loves the Patriots, the Red Sox and knows every player and stat there is to know! He is always smiling and finds joy in each day even when it is difficult. He is my hero. I am riding because he deserves a cure and I am committed to the fight to find one.

I am riding because I am honored to ride alongside the mothers, fathers, sons, daughters, brothers, sisters, and friends I have met on this journey whose lives have been affected by NF. I am committed to them. I am riding for those who cannot ride for themselves and I am riding because it is the least I can do. I am riding because as Melissa said once before, “Jonathan is her champion and every champion deserves a victory.” I won’t stop until he gets his!

About Merideth Hentschel

Merideth lives in Billerica with her husband Michael and two children and is riding in Neurofibromatosis Northeast’s 7th Annual Coast to the Cure NF Bike Ride which takes place on Saturday, September 9.

About the Coast to the Cure NF Bike Ride

Starting and finishing at Stage Fort Park in Gloucester, cyclists can opt for one of three routes of varying lengths: 24, 66 and 100 miles. All routes travel along Cape Ann’s shores and through Manchester-By-The-Sea, Beverly, Hamilton and Ipswich. There will be a post event barbeque for registered riders. Proceeds from the bike ride benefit Neurofibromatosis Northeast.

About Neurofibromatosis Northeast

The Mission of Neurofibromatosis Northeast is to find a treatment and the cure for neurofibromatosis by promoting scientific research, creating awareness, and supporting those who are affected by NF. Neurofibromatosis (NF) involves the uncontrolled growth of tumors along the nervous system and is a highly variable and progressive disorder. NF is not rare, it affects three times as many people as Cystic Fibrosis and Muscular Dystrophy combined. While not all NF patients suffer from the most severe symptoms, all NF patients and their families live with the uncertainty of not knowing whether they will be seriously affected one day. Funds raised from the bike ride will make it possible for Neurofibromatosis Northeast to invest in NF research at premier scientific institutions including the Center for Human Genetic Research at Massachusetts General Hospital. In addition, proceeds help us assist the many families dealing with neurofibromatosis by providing information and support.

For More Information

The bike ride is at: http://nfincne.org/events/event/coast-cure-bike-ride-2017/ and for more information about Neurofibromatosis Northeast, please visit: http://nfincne.org/

Visit Merideth’s fundraising page at: https://www.firstgiving.com/fundraiser/merideth-hentschel/2017-coast-to-the-cure-nf-bike-ride