As I finished reading "Nick's Story" in the Dec. '93 issue of the Newsletter, I felt compelled to write for the first time since Brock was born.
Brock Douglas Wiles was born April 21, 1979 in Jamestown, NY. I'd had my new son home for less than 24 hours when the doctor's office telephoned me. There is no need to explain the shock, disbelief and pain I faced that day, as all of you parents have felt the same.
Children's Hospital in Buffalo, New York was our home for the next three months. Feeling at home (in the hospital) was difficult. I had a 13 month old at home with Grandma from whom I hated to be separated. Three months was like three years!
Brock has classic MSUD, strictly limited to 750 mg of leucine per day. What a challenge! (I needed the insight to buy into a McDonalds 14 years ago; I'd be wealthy today!) His diet is potatoes, potatoes, and more potatoes, fruit, cereals and Egg-free Raisin Bread from Ener-G-Foods. Brock dislikes vegetables, except corn. His formula is Maxamum MSUD mixed with fruit punch and water to yield 12 ounces per day. He drinks 4 ounces three times a day, followed with a glass of water, as this mixture is very concentrated.
Brock's most recent hospitalization was this past Christmas. He caught the flu complete with vomiting and diarrhea, leading to rapid dehydration. Brock begins to suffer from hallucinations and difficulty with his sight when he becomes ill. IV fluids are generally the ticket to prompt recovery. Fortunately, hospital stays are far less frequent than when Brock was younger.
Like Nick, Brock suffers from tendon tightness and cramping. He remains small at 95 pounds and 5 feet even. He suffers from frequent cold sores and sores that crack at each corner of his mouth. He has many hangnails and his finger cuticles are generally red and cracked. He has an excess of ear wax which needs to be cleaned out frequently as it drains. Ear flushes are completed two or three times per year.
Brock has ADHD along with a few other learning disabilities. He (again like Nick) is not highly motivated, could care less about homework, assignments due, or tests. To study at home is a major task. MTV, Nintendo and music are his favorites. He can whip anyone at any video game, knows the words to most rap songs, and can describe any music video in detail. No trouble with motivation there! He, too, loves sports, but energy levels are depleted too rapidly to participate much. Basketball seems the sport best tolerated by him. I wish school grades were as high as his memory of football plays! He remains in the 7th grade (mainstreamed) with 45 minutes of Resource Room per day. Organizational skills are poor, which is very frustrating for the person who is organized; patience is not one of my virtues.
We are not yet worried about the future; we concentrate on weight gain, school grades, and controlling the sassy mouth that is common of most 14 year olds. (This story was written before his 15th birthday.) His poor impulse control and vivid story telling make it difficult for Brock to make lasting friendships.
He is looking for new friends, especially those that can relate to this illness. He loves to write letters and would love to write to anyone who takes the time to write him. He sent out a few letters in the past month attempting to reach out. (He sent one to Nick just a week prior to receiving the Newsletter with Nick's story).
Brock is a truly special young man. He requires firm limits and constant guidance, enjoys testing those limits and resists guidance, but at the end of the day he's the first one to kiss you good night, give you a hug and express his love in front of anyone present! A true gift from God!
Family Histories - Brock's Story