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Success Stories: Harley - Deeply indebted and forever grateful.

Imagine everything that you know to be true in your life, your job, your home, your location, and your priorities changing in one moment. That’s what happened to my husband Jim and I, when our daughter Harley was born 8 weeks prematurely with Down Syndrome. We left our home at Larson Bay on Kodiak Island to give birth to a baby in a hospital and we didn’t set foot in that home again for four years. Harley spent five weeks in intensive care and through the hospital, we were referred to Programs for Infants and Children, an early intervention infant learning program.

We started services immediately. By services, I mean physical therapy, occupational therapy and speech therapy. I cannot stress enough the importance of early intervention - therapies which teach the correct steps for developmental progress from the beginning without having to retrain or break set habits. For example, starting when Harley was 2 days old, an occupational therapist worked with me on the correct way to nurse my daughter in order to train her mouth to function normally. Kids with Down Syndrome’s natural instinct to suck often never kicks in. Early intervention directly contributed to her being free of feeding problems and today her speech is off the charts for a Down Syndrome child.

Also, early intervention therapies teach the parents how to optimize their time with their child. And boy did we need that! When Harley was 6 months old, she developed a seizure disorder called infantile spasms. These seizures will cause devastating brain damage if not stopped almost immediately. Everything we had been through up to this point was like a walk in the park compared to what we were about to go through. The treatment program we chose was very aggressive with lots of side effects, but stops seizures in 7 out of 10 kids and thank God we were one of the seven. Harley received a shot every day for 3 months and, as a result, she had such tremendous swelling that she had to tip her head back in order to breathe and lost all muscle tone she had worked so hard to gain. She was in such agony that she couldn’t bear to be touched and when she lay down, she couldn’t breathe. PIC never missed a beat. They changed her therapy and made her a neoprene body wrap that enabled other people to hold her-- that was a gift to her dad and I because we were living through a 24-hour a day, 7 days a week ordeal.

Today Harley speaks in complete sentences, she can count with help to 100, and she knows her alphabet, colors and shapes. I have no doubt in my mind that this child is the way she is today because of the services she received through early intervention. Through early intervention, all of the “play” that we learned to do (making a game out of exercising her limbs or putting her on her feet) was really early intervention to help her grow or help a muscle group get a memory. The medical services and therapies that Harley needed are not available in Larson Bay and if we had returned we would have a completely different child. Deeply indebted and forever grateful.

- Mallory Hamilton