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In memory of Wyatt, we have submitted and received approval from
the IRS to establish a non-profit tax
exempt foundation.
Spinal Muscular Atrophy (SMA) Type 1 is the most
common fatal genetic disorder of infancy. It is an inherited neuromuscular
disorder characterized by degeneration of the anterior horn cells of the spinal
cord and motor nuclei, causing severe muscle weakness. Onset of the disease is
noted within the first 6 months of life and death usually occurs before age 2.
The Wyatt Kyle Sutker Foundation, Ltd has been established in honor of our
infant son Wyatt, to:
- Directly help families deal with the uncertainty, pain, and agony of
having a new born or infant stricken by Spinal Muscular Atrophy Type I. The
foundation will help parent's deal with the shock of bringing home a
seemingly healthy newborn, only to learn that the child's life will be
measured in weeks, not years.
- Assist in gathering funds for research specifically dedicated to the
nutritional needs of infants stricken with Spinal Muscular Atrophies.
There are few organizations specifically dedicated to support families
touched by Spinal Muscular Atrophy Type I. The Wyatt Kyle Sutker Foundation, Ltd
will
support such families by:
- Providing direct monetary assistance for the provision of non-medical
equipment
- Providing important information on how to care for the newborn or infant
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- Feeding
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- Play
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- Physical therapy
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- Bringing the infant home
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- Massage Therapy
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- Respiratory Issues
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- Grief
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- Medical equipment
In addition the Foundation is working on:
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Providing lists of resources and contacts available to help deal with the
issues surrounding illness and infant death.
-
Providing contact lists for the acquisition of surplus medical equipment
from other families touched by SMA Type 1.
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Providing a point of access for updated information about research and
treatment options for SMA Type 1.
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Providing time and effort to help in distributing information about Spinal
Muscular Atrophy Type I.
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Providing access to a network of parents that have gone through the
nightmare of losing a child to SMA Type I.
As the SMA Type 1 progresses the muscles involved in swallowing and voiding
become severely involved. During Wyatt's short life he struggled most profoundly
with this aspect of the disease. He struggled to swallow, gain weight, void, and
experienced gastrointestinal difficulty. The Wyatt Kyle Sutker Foundation, LTD will
raise money to help fund research specifically geared toward SMA Type 1.
Especially, research that addressed the nutritional and gastrointestinal
difficulties infants with SMA Type 1 experience.
- The address to forward
donations to is:
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- Wyatt Kyle Sutker Foundation,
Ltd
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- PMB #84
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- 6470 Freetown Road
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Suite 200
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Columbia, MD 21044
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