Noonan Syndrome (NS)
Support Group Introductions

Bleyhl, Diane (as at 1/97)

Hello, my name is Diane Bleyhl. I have a son, Alex (14 months old) who has Noonan Syndrome. I also have another son, Aaron who is 5 and unaffected by NS. My husband's name is Bob.

Alex was diagnosed with NS at 7 months. He has had a huge VSD and ASD repair at 5 weeks and came home at 6 weeks, bilateral inguinal hernia repair at 6 months, and for severe feeding issues, a G-tube at 11 months. Alex was in and out of the hospital during his first year and was termed with failure to thrive at 4 months. He had NG feeds til 5 months. For lack of growth and weight gain after that, a GT was placed last November 1996 . Since Alex has a weakened immune system, he has been sick most of the winter. Alex also caught a nasty virus at 2 weeks of age, called RSV, which left his lungs very damaged. We are, a year later, stilll dealing with that. Alex is on 4 breathing medications 4xs a day which take almost 1/2 hour each time. Alex has worn glasses for 3 months now. He also has a umbilical hernia which is starting now to say hello. With the help of the G-tube (button) and nighttime feeds on a pump, Alex has gained 2.5 pounds since the tube placement. He is now 17.5 lbs. In the last month he has begun to talk a lot (6 words and a lot of nonsense) and has gone from sitting stiffly to getting to and from sitting, carwling on all fours, pulling to stand, and cruising around furniture. We are very proud of his development.

We are also ecstatic that we have such a wonderful support group, with constant caring friends. We are here together, and we have begun our long journey with one another. Thanks, you guys, we love you!

Anyone who wishes to contact us can reach us at:

Email: Bleyhl@ap.net
Phone: (707) 539-8715
Home Address: 5938 Monte Verde Dr.; Santa Rosa, CA  95409

The Noonan Syndrome Support Group, Inc. and any associated parties will not be held responsible for any actions readers take based on their interpretation of published or disseminated material. Please review medical treatment and decisions with your physician.