Child Of The Month

Lisa 16 yearsLisa Poore
Age 16

Lisa was diagnosed via prenatal amniocentesis to be a carrier of inverted duplicate 15 chromosome by Dr. Aubrey Milunsky at the BU School of Medicine. But in 1990 it was not clearly known what her diagnosis would be. It was initially thought that she might have either Angelman Syndrome or Prader-Willi Syndrome. After Lisa was born we were referred to a Prader-Willi clinic at the Spaulding Rehab in Boston run by the late Dr. Robert Wharton. Through evaluations by Dr. Wharton and his clinic both Angelman and Prader-Willi syndromes were ruled out. Lisa was diagnosed with IDIC15 when she was 18 months old at the Children’s Hospital in Boston. Lisa was also born with scoliosis (curvature of the spine) and wore an upper body brace from age 3 to age 11, when she had surgery to have two steel rods attached to her spine. Since her surgery, she does not have to wear the brace.

Lisa’s early years were faced with the typical challenges of our IDIC15 children, fighting for early intervention, evaluations, and all of the required therapies to help Lisa develop her skills as early as possible. We did continue to see Dr. Wharton for many years and he became Lisa’s medical advocate for us assisting with evaluations and recommending therapies she required to develop her to her greatest potential. Although Lisa does have some autistic mannerisms, she was not diagnosed autistic and she has never had a seizure.

Now at age 16, Lisa has surpassed beyond all expectations from what any of the doctors expected of her based upon her diagnosis. As parents we always expected the most for her and we have always required that from our school system as well as from ourselves. We have learned to challenge her and expect only the highest results, and some are achieved and others not quite. Her achievements include swimming lessons at an early age (4) and she is now a good swimmer, her joy of various video games, Tae Kwon Do lessons, horse back riding lessons, she has learned how to ski and ice skate, and of course her biggest passion is our dog, Sparky (a Cairn Terrier). Each morning, and we do mean each morning, Lisa’s first stop is to see Sparky. Some mornings we are jealous of Sparky, but mostly thankful that he is her first stop and she is not in our bedroom patting our heads.

Lisa has an older brother Michael, who just finished his freshman year at UNC Charlotte. She missed her brother when he went away to college, but she learned so much from him and we know that will continue. He was always willing to show her how to swim to the bottom of the pool to grab the colored rings as well as being patient with her when teaching her how to use the game controller so she could drive a motorcycle in a video game.

Lisa continues to learn new skills and her vocabulary never ceases to amaze us. And as a typical high school student, sometimes even shocks us. But she does possess the gift to chat endlessly and when friends stop by, she is a gracious hostess offering everyone a cup of tea! And last but certainly not least, Lisa provides unconditional love for her family and her friends.

Lisa on the slopes

 

Child Of The Month Archive

Exceptional Parent Magazine Feature Article
by Cindy Johnson
Alexis Johnson Alexis Marie Johnson
Child of the Month Lisa Poore Travis Ritter
Child of the Month Lisa Poore Lisa Poore
Child of the Month Spencer Gray Spencer Gray
Child of the Month Lindsey Young Lindsey Young
Child of the Month Olivia Taylor Olivia Taylor
Special People Profile Cheyenne Cheyenne Rain Jackson
Special People Profile Naomi Naomi
Special People Profile Bobby Bobby
Special People Profile Kevin Kevin
Special People Profile Olivia Olivia
Special People Profile Megan Megan
Special People Profile Sarah Sarah
Special People Profile CheyenneD Cheyenne D
Special People Profile Joshua Joshua
Special People Profile Robert Robert
Special People Profile Fredeerique Frederique
Special People Profile Julia Julia
Special People Profile Ryan Ryan
Mount Prospect Times Article Jake
Epilepsy Foundation Newsletter Will
Exceptional Parent Magazine Story Joshua D