On June 17, 2013 the most precious baby boy came into our lives through adoption. Isaiah has Prader-Willi Syndrome. May is PWS awareness month so I was asked to write this blog.
PWS is a rare, non-inherited genetic disorder occurring in about 1:15,000 live births. It affects the chromosome 15 which controls the hypothalmus. Children and adults have a compulsion to eat that cannot be controlled.
Babies born with PWS have low muscle tone and poor suck reflex which causes them to be diagnosed failure to thrive. Because of the low muscle tone they sleep a lot and will sleep through their feedings. This causes them to need a feeding tube (G-tube) while they work on learning to bottle feed.
Isaiah receives Early Intervention therapies, which include Physical, Occupational, Speech therapies and Special Education. He is also followed by a feeding clinic to help increase his muscle tone to bottle feed and help with his diet and nutrition.
Due to his low muscle tone Isaiah can get sick easily. Just a simple cold could cause him to end up having to be admitted to the hospital. This will improve with age..
As he gets older he will develop hyperphagia (uncontrollable hunger), close control of his diet through a nutritionist and behavioral therapy will be needed.
With all that said you are probably wondering why did we choose to adopt a child with PWS? Children with PWS are such a blessing, they are fighters and can accomplish anything set before them, it may take them longer but they will not give up. When you look beyond all the complications of this disorder they are just children. Isaiah has the most amazing sense of humor, and a beautiful smile that will melt your heart in a minute. When he achieves a milestone it is celebrated big time in our household.
There are many promising research studies being done to find a cure for PWS. Awareness and acceptance of this disorder needs to continue
for our children to thrive. In the meantime, we will not give up and continue to celebrate Isaiah’s life everyday!
Resources:
http://www.fpwr.org
http://www.pwsausa.org
www.pwsresearch.org