Noonan Syndrome is a condition, which affects both children and adults. As with other disorders, it affects the person with the disorder and their family as well. We have found valuable resources for support and information as well as learned that "living with" a disability may always be a challenge, but does not have to incapacitate the person or the family.
We have a daughter, now age 19, with suspected Noonan Syndrome. Often called a "hidden" condition, the children affected may have no obvious casual signs to the onlooker, but the problems may be many and complex with no clinical test available. Part of our frustration has been the inability to get positive proof of the syndrome, so we, like many others with "suspected NS", learn to manage her health and psychological care by joining groups who have members with similar defined characteristics and behaviors. We take help from as many resources as possible.
Noonan Syndrome is a genetic condition that can affect the heart, growth, blood clotting, mental and physical development. Affected individuals may have behavior problems, learning difficulties and many other anomalies. In our daughter’s case, it was also found in conjunction with Asperger Syndrome. Asperger Syndrome is within the autism spectrum. There are many characteristics within the spectrum and through experience as a mom and educator/speaker I have found many others with Noonan Syndrome who share some of these same autistic/like characteristics as our daughter. For that reason we stay in contact with those having Asperger syndrome as well as those having NS.
As the parent of a daughter diagnosed with Noonan-like Syndrome, we have found The Noonan Syndrome Support Group, Inc (TNSSG)
http://www.noonansyndrome.org/ to be of incredible help. The members are aware that many with the diagnosis are not certain of the diagnosis; but because their individual may have many of the same characteristics as those shared by other individuals diagnosed with NS, it is helpful to stay with this most supportive, caring, knowledgeable group of folks. The group accepts all that are seeking to learn about the conditions associated with NS. Many of the members share our "might be NS" diagnosis.Don’t be afraid to ask questions and look around for all possibilities, but mainly remember, an alphabet does not a child make. Your child is your child, a diagnosis does not change who they are, just points you to places where you might learn more about your child.
Martha Kate Downey
Writer/speaker/educator, but mainly just mom
Euless, Texas
www.mkdowney.commdo651@airmail.net