Haleigh Kafferlin

Haleigh was born January 27, 2003 and diagnosed with acardia syndrome about 8 weeks later. She began having infantile spasms when she was about a month old. We tried everything to get them under control. We started with vigabatrin and stayed on that for almost 2 years while adding and subtracting medicine after medicine with no luck. We did a round of ACTH and no change. We began the ketogenic diet only to find that Haleigh had a milk and soy allergy that would not allow us to continue it. For 2 years we struggled to keep the spasms at a minimum but she was having them daily sometimes up to an hour. Finally in April of 2006 our nuerologist suggested a vagal nerve stimulator. It is an implant that sits under her collarbone and connects to her vagal nerve. It is programmed to send an impulse every 5 minutes to break up any seizue activity. It also has a magnet that can be swiped over the device to activate during a seizure. This was our miracle!! It took some time to find the setting that worked best for Haleigh, but finally the seizures decreased!
Currently Haleigh still has seizures almost daily but they are mainly very small twitches. She continues to function right throught them. And we do have our seizure free days! Haleigh also takes zonogran and kepra but we are working on decreasing doses and eventually removing the kepra.
Haleigh is seen by an amazing nuerologist team at Pittsburgh Childrens Hospital. I cannot express how lucky we are to have them! She also attends the Elizabeth Lee Black School run by the Dr. Gertrude A. Barber Center. This school has been amazing! They provide Haleigh with PT three times a week, OT twice a week and speech once a week. They also work very closely with equiptment suppliers right in the school. So when Haleigh needs new braces, repairs to her wheelchair or any special equiptment, it is all done right in school!
When Haleigh was first diagnosed, we were told that her quality of life would be very poor. She would not even be able to hold her own head. Today Haleigh is so far from the opposite! She is so determined to be independant! She sits on her own, belly crawls, walks using a gait trainer and has even begun using a potty seat in school! She does not have any verbal speech but uses about 5 signs and is working with a switch board to communicate her needs.
Haleigh loves using a touch screen computer and runs many programs on her own! She also loves Sesame Street, Dora the Explorer and Mickey Mouse. She loves going out in the community and can spot a baby a mile away!
Haleigh has truly been a blessing! We have had our struggles and it awful watching her suffer with seizures and feeling so helpless. But here she is today, happy, healthy and amazing us everyday!