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Organized by: COURTNEY DARBY



Hello, my name is Courtney Darby, and I would like to tell you about my Beautiful daughter Italeigh. She was born December 15, 2011 at 34 weeks and weighed only 2lbs. She was in the NICU for a month and a half. Once she reached 4lbs she was finally able to go home. While Italeigh was at home, she was on low oxygen and received in home therapy to work on her arms, legs, and all four of her extremeties. This was extremely vital to her muscle development as a premie.

During one of her routine check ups, the doctor noticed her right leg was popping in and out of her hip socket which prompted an immediate xray. Unfortunately, we found out that she had hip dysplasia. The doctor recommended that she wear a hip brace for 6 months. When we took Italeigh for another check up at the Orthopedic clinic another xray was ordered. It showed that her hip and leg were healed, but the doctor was more concerned that she was not walking. This time, Italeigh was referred to a Muscle clinic in the hopes of figuring out why she wasn't walking. To our disappointment, we found out that she had low muscle tone in her arms, legs, and all four of her extremeties. To make matters worse, a series of blood tests and MRI's were performed to pin point the cause of Italeigh's low muscle tone. After the series of tests were performed, Italeigh was diagnosed with having Collagen 6 Myopathy. Futher testing was ordered to find out the specific type of Collagen 6 Myopathy that Italeigh had for a complete diagnosis. We had to wait an agonizing 6-8 weeks for the results to come in. When we finally recieved the results, we were devistated to find out that Italeigh carries a gene that is so "different and unique" there is none like it in the world. It has never been seen before. Due to the uniqueness of her gene, the doctors couldn't tell us the specific type of Collagen 6 Myopathy she had. Based on the entirety of her test results and diagnosis, the doctors were unable tell us what kind of life she would have, but did tell us that Collagen 6 Myopathy causes respiratory and heart problems. We were also told to keep vigilant with her spinal growth to keep her from developing a hunch in her back. The doctor said Italeigh would need lots of Physical Therapy (PT) to get her muscles strong.

Italeigh is almost 3 now, and she is still not walking. She continues to go to PT which is helping her get her legs strong enough to support her upper body to walk. She is unable to keep up with other children her age, but that doesn't stop her. She works extremely hard and gets tired at times during her PT sessions, but she is so strong and has a beautiful heart she doesn't let her disability get in the way. Right now, Italeigh is covered under Medicaid. Sadly, the doctor told us that eventually Medicaid stops paying for PT and other medical expenses. The doctor also told us we need to keep Italeigh in PT, because it is critical to her growth. Our mission is to find a way to keep Italeigh in PT once they stop paying for it.

As Parents, and Grandparents we are doing all we can to help raise money for the things Italeigh needs. Aside from our full time jobs, we sell coffee, scented body oils and lotions. I even made a special scented body lotion specifically for Italeigh and named it after her. We are asking for your support to help with Italeigh's therapy, doctor visits, medication and medical supplies that aid in getting her bones and muscles strong. Thank you for your consideration and taking the time to read about my Beautiful Little Italeigh. My Family and I would greatly appreciate any help that you can offer.

Be Blessed and be a Blessing to other's....


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