Lisa

Where does our story start? My beautiful Lisa was born on August 30,1983. She has a brother, Brian 3 years older and a sister Theresa 7 years older. When I was pregnant with Lisa, I knew something was different because she never kicked. I felt flutters but no kicks as I did with my other 2 pregnancies. The doctor told me that all pregnancies are different and not to worry...so I didn't.

Lisa was born 3 weeks early but had preemie characteristics. The doctors thought I messed up my dates....I did not...I knew exactly when she was due. Lisa had no suck reflex and had to be fed with a preemie nipple that had to be dripped into her mouth. She weighed 6lbs.2oz. At birth and dropped to 5 lbs. 2 days later. At 3 months old when she was not sucking any better and still wasn't gaining weight her doctors decided to send us to Boston Children's Hospital in Massachusetts.

They diagnosed Lisa with a 10th chromosome disorder, trisomy 10p. They told us that it was very rare. They prepared us for the future telling us she would likely not survive the year and if she did she would have severe mental impairment and would never walk. Lisa needed a feeding tube when she was 2 and 2 Nissan fundoplication surgeries shortly thereafter. She weighed 10 lbs at 2. She started to hold up her head when she was 2 1/2. She never crawled. She would roll to get where she wanted. At 4 she weighed 18 lbs. She actually gained her most weight that year and by 5 weighed 25 lbs. She stood up at 6 and actually took steps at 7 with the help of a walker. You can imagine how excited we were. She spent most of her first 5 years in the hospital for surgeries and dehydration. To make a really long story shorter, she went to local schools in a special class and received a certificate of completion when she was 22. The whole graduating class as well as family and friends stood when Lisa crossed the stage and gave her a standing ovation. I don't ever remember crying that hard. Lisa has been in a day hab setting for the past 6 years and is the most lovable, sweet girl in the world.

She is now 28, and other than neck and spine issues, is doing great. She communicates with limited words and sign language. She sure lets us know when she wants something. She weighs 69 lbs now. She no longer has a feeding tube and loves to eat. Pasta is her favorite. Lisa is our most precious gift and I can't imagine a day without my little sunshine.

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.