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Jordan David Specht

Jordan David Specht


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The Life of Jordan David Specht


We called Jordan mostly by his nicknames, JD or Jake. JD was our only son, the oldest of my three children. His sisters are Jenna and Jacie, who miss him so very much. He was a boy that was filled with laughter, joy and a love for life. His passions were skiing, hunting and archery in which he was very skilled at. He enjoyed skateboarding, rollerblading and riding his mongoose bike. His motto was always to have “No Fear”. Jake enjoyed the company of his friends, he was a “true friend” someone who could keep confidential secrets and his friends would always confide in him. He was very helpful, kind, compassionate and had a keen perspective of people. He would share everything he had with his friends or even strangers. A “humble hero” is what I called him. He never complained about his pain, he never let anyone know that anything was wrong with him. He didn’t want to be treated differently. He was a very special person, someone that truly touched many lives.

Jake was born one month premature and had a clubbed foot. When he was about four years old, we noticed something just wasn’t right. He was clumsy, needed stitches often, had bruising. He was misdiagnosed as having the Classical Type of EDS (old Type II). We tried to limit a lot of his activities, to try and keep him from injuring himself. This was very tough on him growing up. Jake was in pain daily, often he would complain about stomachaches, where he would breakout in cold sweats. While trying to find out the cause, it was suggested by his doctors to have a skin biopsy done. Well, the biopsy confirmed that he had the Vascular Type of EDS (old Type IV). We were completely devastated.

Two years after the correct diagnosis, Jordan suffered an arterial aneurysm in his kidney. The surgeon repaired the damage; he did survive and seemed to be recovering. One week later, he developed massive internal bleeding, from other aneurysms that couldn’t be stopped. Our 14-year-old son lost his life on June 26, 1997. Our grief is unimaginable.

I’ve dealt with my anguish and heartache working like a woman possessed a “Mom-on-a-Mission” to spread Ehlers-Danlos information and to try and keep my son’s memory alive. To remember him – at his school we started a Memorial Award in his name for “Kindness & Courage”. To help raise awareness for EDS: we started the Jordan David Specht Golf Memorial in 1998, to bring education and research money for EDS. The first two years were very successful and our community was wonderful, all the support, love, and giving from local businesses truly made this day very special. I’m pleased to say that in those first two years alone, we raised over $65,000.00 for the Ehlers-Danlos National Foundation (EDNF). Thousands more were raised each year for them, up until 2007.


Psalm 23:4

“Yea, though I walk through the valley of the shadow of death,

I will fear no evil; for thou art with me; thy rod and thy staff they comfort me.”


By Jordan’s heartbroken mother,  Diane Specht


“There are many tears in our broken heart that never reach our eyes ~ There is a grief that ages the face and hardens the heart – yet, softens the spirit ~ A grief that cast shadows on the eyes – yet, broadens the mind.

A grief that keeps the pain and has no words – but increases the understanding ~
There is a grief that breaks the heart and wounds the soul,
that last and lasts and can shatter in a minute…
but will inspire for a lifetime”


No Envy  “No Fear”  ~ Joshua Radin