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Ashleigh's Journey of Hope 
Ashleigh Ryann Gwin
Born: November 15, 2002 Weight: 7 lbs 10 oz Length: 19 1/2 inches
Ashleigh is a beautiful baby girl, who in June 2003 was diagnosed with Krabbe Leukodystrophy. Ashleigh had 8 days of Chemotherapy and on August 27, 2003 she received an Umbilical Cord Stem Cell Transplant. On November, 29, 2007 at 10:00pm, Ashleigh received her wings and was healed in Heaven with Jesus. In the pages to follow you can read about Ashleigh, see some pictures of her and offer support by signing her guestbook.
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Globoid Cell Leukodystrophy, more commonly known as Krabbe disease is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems. Children who inherit the disorder lack an important enzyme (GALC) that is needed for the production of normal myelin (white matter) in the central and peripheral nervous systems. Myelin is the protective covering of the nerve cells and acts like insulation surrounding an electric wire. When the enzyme, GALC is deficient it produces toxic substances in the brain, causing myelin loss, changes in cells and neurological damange. Progression of the disorder is rapid and death occurs in early childhood.
Krabbe Disease is inherited in an autosomal recessive manner. If both parents carry a disease causing mutation in the GALC gene there is a 25 persent chance of having a Krabbe affected child, a 50 percent chance of having a child that is a carrier and a 25 percent chance of having a child who does not carry the disorder. This genetic disease is found in ALL ethnic groups. Krabbe occurs in about 1 in every 100,000 live births in the United States. Diagnoses is made by testing the white cells in the blood for GALC activity.
Where there is Hope, There is Faith Where there is
Faith... There are Miracles
Journal
Tuesday, September 2, 2008 6:40 AM CDT Many of you know my friend, Colleen, she has been an incredible friend to me since we met at therapy 4 years ago. Colleen's father earned his wings and was healed yesterday morning from brain cancer. Please keep Bill and his family in your prayers as they enter this journey. caringbridge.org/visit/billconaty
Thank you all so much for your post and messages this week. Thank you all for still checking in on our family. We have a huge favor...we are making a cookbook in honor of Ashleigh. We are asking for you all to send your favorite recipes with your name and how you know Ashleigh. Please send it to my email... moocow517@comcast.net
We will be starting a foundation in Ashleigh's name to help children receive the equipment and supplies they need for therapy. We think it will be called Ashleigh's Gift of Hope. Ashleigh received wonderful therapy and we want to help other children meet their potential. I will always be grateful for her therapist who believed in her...Jen teaching her to communicate when so many didn't believe that was possible, Jamie teaching Ashleigh to bare weight and Ellie and Sue Ross teaching Ashleigh to hit switches. I will let you know more about the foundation as we look more into things...
Mackenzie had a great first week of school. We spent this weekend looking for a barn for her to ride. We selected one that was recommended by Dr. Escolar called Pleasant Hill Farm. We took Mackenzie to get new riding boots, gloves and breeches. Her helmet still fits her. We also looked at high boots and show clothes. It was great to see her so happy.
Thank you all for your continued support, thoughts and prayers.
Read Journal History
Hospital Information: Heaven
919-768-0837 - our home
Links: www.huntershope.org information on Krabbe
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