Withum’s own, Jay Sexton is on a 200-miles journey with his niece, Jennifer Smith, to help find a cure for histiocytosis, a neuro-degenerative disease affecting his dear friend, Myles. This compassionate undertaking, MORE MILES FOR MYLES, was the idea of Jay and his lovely and loving wife, Katy.
Please join Jay and Jennifer in their hike to find a cure for this disease by donating. All medical research that may benefit Myles is being funded by loved ones, friends and neighbors such as you. A tax deductible donation in any amount would be greatly appreciated. Please include “MORE MILES FOR MYLES” in the comment or memo line of any donation to the Histiocytosis Association at: www.histio.org
Hello. I hope this finds you well. I am writing to share the story of my son, Myles and our friend Jay Sexton whom we met at church (St. Paul Lutheran Church in Carlisle, Pennsylvania).
The story begins when my son Myles was a little more than a year old. Myles developed a tumor on his skull under his right eye. After many anxious weeks of testing, Myles was diagnosed with langerhans cell histiocytosis (LCH) and the tumor was surgically removed, We thought our baby was cured.
To our dismay, three months later we discovered more histiocytosis tumors on our son’s skull which were then treated with a prolonged course of moderately aggressive chemotherapy. By the time our Myles was 2 years old, he was so accustomed to chemotherapy treatment he no longer winced or even fussed when they injected him. What a soldier. We again thought that the worst was over for our Myles.
However when our Myles started school, his 1st grade teacher (God bless her) at Cumberland Valley School District reached out to us in the first few weeks to express that Myles had difficulties that the other kids did not have. This was the first sign that Myles was suffering from the late neurodegenerative effects of LCH. Doctors theorize that one or more of the tumors had perforated Myles skull breached his brain causing a progressive neurodegenerative condition which has been slowly taking Myles abilities away from him.
Myles enjoyed a childhood in Cub Scouts and Boy Scouts, as an acolyte in his church, started wrestling at Cumberland Valley School District, rode his bike, etc. However, as the years passed, Myles motor skills declined more and more. By age 12, Myles was no longer able to ride his bike without falling off. Myles resigned as acolyte at his church due to his fear that he would fall and burn someone – a valid concern. By age 15 Myles required a wheelchair to safely get around.
As Myles progressive neurodegenerative condition is centered in the part of his brain which controls his body, Myles speech is becoming more and more impaired and so Myles is learning a speech app on his ipad to help him communicate. Today Myles requires assistance transitioning in and out of his wheelchair and with many basic daily activities.
Myles is blessed with a loving and outgoing personality. Myles loves everyone he meets – and befriends everyone. Myles loves staying in contact with family and friends. Active in his Lutheran faith and church (which has given him great fortitude and support) Myles continues to participate in activities such as dutifully serving as water boy for the CV Eagles Wrestling Team and participates in Easter Seals programs.
In 2010 Myles good friend Jay Sexton from St. Paul Lutheran Church, at the age of 72 non-the-less, bravely and successfully climbed Kala Patar (18,372 feet), on Mt. Everest, in the Himalayas in honor of Myles to raise funds for Histiocytosis research.
Now, in August 2014, Jay is hiking the last 200 miles of the Appalachian Trail to Mt. Katahdin with his niece, Jennifer Smith to raise funds for the Histiocytosis Association (www.histio.org for more information) to fund medical research for a cure. This compassionate undertaking, MORE MILES FOR MYLES, was the idea of Jay and his lovely and loving wife Katy who I am heartbroken to share God called to be with him recently.
We miss our friend Katy dearly and are touched that Jay has chosen to pursue their plan to raise additional funds for HISTIOCYTOSIS with his niece Jennifer Smith stepping in for Katy. More research is needed to end the disease that is taking Myles away from us and those who love him. God speed Jay and Jennifer!
Won’t you please join us in the fight by supporting Jay and Jennifer in their hike to find a cure for this disease. Virtually all medical research that may benefit Myles is being funded by loved ones, friends and neighbors such as you. A tax deductible donation in any amount would be greatly appreciated. Please include “MORE MILES FOR MYLES” in the comment or memo line of any donation to the Histiocytosis Association at:
332 North Broadway
Pitman, NJ 08071
Myles is in need of the research results that your donation to the Histiocytosis Association will fund. A sincere THANK YOU for considering this request to help Myles and others suffering from histiocytosis find a cure.
Thank you and God bless,
Myles, Mike and JoEllen Clapsadl, Jay Sexton and Jennifer Smith