On Sunday May 17, 2015 the Stradwick- Miller family will be hosting a quarter auction benefit for Zachary.
When Zachary “Zack” Miller was born on March 13, 1990, he had a “birthmark” on his inner right thigh that his Pediatrician said we need to watch. The Pediatrician had never told me why we needed to watch the birthmark.
At this time Zack had developed this lumpy skin on the top of his right thigh. This was the first time I had heard the term Neurofibromatosis (NF). The birthmark was called a café-au-lait spot
Most of our friends and family had not heard of NF. One friend knew of NF because his son died of complications from NF at the age of seven.
Zack was referred to a Geneticist. He was officially diagnosed with Neurofibromatosis. By age three he developed more of the lumpiness-neurofibroma (tumor), a 22 degree scoliosis and his right leg was longer than his left leg
Zack started school with his age group and was an excellent student. He played T-ball and basketball. Tumors developed in his left ear and on the right side of his neck by the age of seven. I received calls from the physical education teacher and school nurse with important information. Zachary couldn’t do a sit up nor could he hear in his left ear.
Zack was referred to Cleveland Clinic to see a Pediatric Neurologist that specialized in NF. He was referred to a Cleveland Clinic Otolarynologist that removed tumors from his neck and ear.
Zack had many changes in his NF in 2002. The plexiform neurofibroma (tumor) now including his right hip began to grow rapidly. The tumor in his ear grew back. His scoliosis went from 22 degrees to 53 degrees.
At Cleveland Clinic he had a biopsy on a benign tumor on his right hip in October 2002. He had a spinal fusion to correct the scoliosis in June 2003. In September 2003 his left hip dislocated. His left hip was surgically repaired then dislocated again two days later when Physical Therapy (PT) began. His hip was repaired again and he was placed in a cast that placed his legs in a frog position. He was in this position for two months. He began PT in a rehab center. The hip dislocated again and remains dislocated. His left leg is now weaker than his right leg.
Zack is mobile with a wheel chair. Being seated was painful because he was sitting on a tumor. This tumor began growing again in 2004. His physicians felt that the tumor needed removed but because of the size and involvement they didn’t know who could.
A doctor at University of Chicago reviewed Zack’s history. He removed the tumor July 2005.
Zack has been to physicians in Wheeling, Erie PA, WVU, Pittsburgh, PA, Cleveland Clinic, Health South, University of Cincinnati and University of Chicago.
Zack has medical insurance through my employer. Getting his care would have been difficult without it. It is also difficult with insurance because of referrals, denials and hearings. He has such specialized medical issues that he must be referred to physicians outside of the insurance plan.
Our insurance has changed every year since 1999. Insurance doesn’t cover transportation, hotels and meals while away. We’ve log thousands of miles on our vehicle. Sometimes hotels give hospital rates but are still expensive.
Zack had to work hard from 2003. He was in and out of school including half days and homebound. He was able to build up his strength. He had to become mobile again in and out of his wheelchair. He had a strong senior year. He was able to graduate with his class in 2008.
He went to college with his age group. Unfortunately, in 2011 he was in an accident in his college’s disability van. His wheelchair wasn’t properly secured. This has set him back 5 years.
We have been trying since 2011 to find help for Zack. He is in a great deal of pain. It took a while to find the causes of his pain. He was referred to Washington University Center for Advanced Medicine in St. Louis, MO by Cleveland Clinic.
Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births).
Auction will be held at West Virginia Northern Community College B&O Auditorium located in Wheeling WV.
Admission is only $5.00 which includes your first paddle. You can purchase additional paddles (max 3 paddles) for just $1.00 each.
Doors open at noon. Auction starts at 1 pm.
50/50, Chinese Auction. Plenty of refreshments for sale.