Spring 2000 letter writing campaign a success!
This Spring, in memory of Wyatt's life, Julie and I wrote to all our friends. We told them of Wyatt's short but sweet life. Below is a copy of the letter we sent.
We even enlisted the help of my parents, Pat and Marshall, my sister and her husband, - and my dear neighbors, from Evanston, the Baums.
We sent out over 400 letters asking for support in raising funds to assist in the research efforts into the genetic causes of SMA, help in the research effort into the nutritional aspects of SMA, and to help the Foundation help families struggling with a infant stricken with SMA.
As of July 1st we have had over 200 responses and have raised over $15,000 dollars. The Foundation can not thank our friends and family enough for their support and encouragement.
Wyatt Kyle Sutker was born on a beautiful, sunny November day in 1998. With anxious anticipation, we welcomed his long awaited arrival. Wyatt was a quiet, good-natured little boy who passed all of his developmental tests with flying colors. Following concerns raised during his 2-month check-up, Wyatt was seen by a pediatric neurologist who diagnosed Wyatt with Spinal Muscular Atrophy Type I. In one day this perfectly happy and seemingly healthy baby suddenly became "gravely ill." Expectations of first words and first steps were replaced with the realization of potential death within the first year of his life --a staggering prognosis.
Wyatt earned his angel's wings when he was just 5 1/2 months old in April 1999.
A Hundred Years From Now It Will Not Matter The Sort of House I Lived In, The Kind Of Car I Drove, Or What My Bank Account Was…But The World May Be Different Because I Was Important In The Life Of A Child.
WHAT IS SPINAL MUSCULAR ATROPHY TYPE I?
Spinal Muscular Atrophy (SMA) Type I is the most common fatal disorder of infancy. It is an inherited recessive genetic neuromuscular disorder causing severe muscle weakness and is characterized by degeneration of the anterior horn cells of the spinal cord and motor nuclei. Onset of the disease is noted within the first 6 months of life and death usually occurs before age 2.
SMA Type I is also called Werdnig-Hoffman disease. Although the severity varies for each child, most are never able to lift their heads or accomplish normal physical milestones. Difficulty with swallowing and feeding is common and most SMA Type I children require extra oxygen for comfortable breathing. Children with SMA Type I are able to sense and feel normally, and are typically described as unusually intelligent and interactive.
1 in 40 people in the general population is a carrier of SMA.
1 in every 6,000 live births is affected.
It is a disease that crosses all ethnic and cultural barriers. Both parents must be carriers and pass the defective gene on to their child to inherit this fatal condition; with each pregnancy, there is a 25% chance of a child being born with SMA Type I.
WHAT IS THE WYATT KYLE SUTKER FOUNDATION, LTD?
The Wyatt Kyle Sutker Foundation, LTD is an IRS recognized, tax exempt, organization established in April of 1999 to honor this precious little boy. It is the Foundation's goal to:
HOW CAN YOU HELP?
In the past 5 years, great progress has been made in diagnosing and understanding SMA Type I. The genetic deletion has been identified and infants can now be diagnosed through a blood test rather than a painful muscle biopsy. Research has also provided information on the role of the SMN gene, which is necessary to provide clues for possible treatment. However, there is still much work to be done and scientists are dedicated to helping children with Spinal Muscular Atrophy.
Your tax-deductible gift will make it possible for The Wyatt Kyle Sutker Foundation, LTD to contribute funding to assist in this necessary and expensive research. Your gift will also help the Foundation support the families whose children are being diagnosed every day. Your generous support will help the Foundation provide much needed information about SMA Type I, treatment options, caring for the infant, and resources for medical equipment, care, and emotional support to families experiencing the nightmare of SMA Type I.
As a lasting memorial to Wyatt, the Foundation would like to help provide compassionate support to families with SMA infants and to help them and their children cope with this nightmare. Please complete the enclosed card and return it to us, don't forget your email address if you'd like Foundation updates If you don't have an email address and would like updates, just let us know.
If you would like to learn more about SMA and the toll it takes, please visit Wyatt's web site at www.wkswithsma.org.
Steven and Julie Sutker, parents of Wyatt