My De Novo Story

---

My daughter was born in 1983. As a toddler she often walked on her toes. My wife took her to see a pediatric neurologist in a larger city who misdiagnosed her with Spastic Diplegia, saying that she had been deprived of oxygen during birth. The prognosis for her future was that she would be wheelchair bound as a teenager and so forth. We did surgery to lengthen her heal cords and she had casts on both legs in kindergarten for a long time while that healed. She seemed to grow up very normally from that point.

My wife and I divorced in the early 90s. I mistakenly remarried shortly thereafter. It was in the late 90s that several close friends, family and acquaintances would comment on my limp and suggested I seek more medical help. My PCP referred me to several different doctors in my small town but they could not determine the cause of my limp. I finally asked my PCP to send me to the best neurologist in Texas. He asked if I was sure because it could be expensive. I said that seeing all of these other doctors with no answer was expensive as well.

These were the days of the first of the World Wide Web. One day, I was searching on the WWW and searched on two words derived from the fact that Heather and I were related, (hereditary) and also on the diagnosis she had received (spastic) and the condition "hereditary spastic paraplegia" popped up. I read the symptoms and wondered if this could be my diagnosis.

I saw Dr. Stephen Appel in Houston. For three days I was put through all sorts of tests, most of the time the nurse or clinician would say something like "there is nothing wrong with you". Then, some of the tests did show some abnormalities in the way signals were being conducted to my lower limbs from my brain. After 3 days Dr. Appel diagnosed me with Hereditary Spastic Paraplegia.

I later heard that a gene test could be done to confirm this diagnosis. I went through the what seemed like an enormous expense to run this test and it came back with SPG4 as my HSP gene.

In the mean time, I was trying to help out as much as I could and so sent some donations to support Dr. John Fink who was the primary United States expert on HSP. He had a medical conference for HSP in the year 2000. My father and I attended that medical conference. My father was hoping that the symptoms were all psychosomatic due to some guilt I was feeling about my daughter. He wanted to see Dr. Fink and have him either confirm or not confirm my diagnosis. We say Dr. Fink and he confirmed my diagnosis.

At that conference I met several people with HSP. That connection led to some people in a new foundation called The Spastic Paraplegia Foundation to learn about me. One of their ambassadors came to my small town where we shared a meal with a couple of other people in my area with HSP. That ambassador was the secretary for their board of directors. When she resigned as secretary, she asked if I would be willing to take over to which I agreed.

The Spastic Paraplegia Foundation had been founded in 2002. I became acquainted with it and assumed the job of being the secretary of their Board of Directors in 2005. The Foundation's mission is to support research to find a cure for HSP and a related upper motor neurological condition, Primary Lateral Sclerosis.

My employment during all of this time was with a family owned Direct Marketing Company who specialized in the sale of gift packages of fresh fruit mostly during the holiday season. It was a lucrative business and it kept me very busy running the company to the point of being a workaholic and ending my first marriage. It was so lucrative that my second marriage was mostly about her wanting to get millions in a divorce. She was successful in her quest. I was divorced for the second time in 2002. I married again in 2005.

In 2007 a rare citrus disease caused my family to entertain the idea of selling our company before the disease eliminated the primary source of fruit that we were known for, red grapefruit. Our company was sold in 2007 after which I decided to get my master's degree at SMU n Dallas.

I graduated in 2010 with a masters degree in Theological Studies. It was at this point that I was asked to be the President of The Spastic Paraplegia Foundation, to which I agreed. I have been the president of SPF ever since. It is now 2018.