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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
Thursday, July 17, 2008 2:28 PM CDT We have been so busy.
We went to the beach in New Jersey to drop Mackenzie off with her mom-mom before heading to New York for the symposium.
Never did I feel so much comfort from so many families. It was amazing the support and kindness we received. I had wonderful conversations with so many mom's (and a couple of dad's) about our children. I don't think I cried as much as I did there the entire time we had Ashleigh and it didn't matter because...everyone understood and supported me. I hope one day I could give as much of myself as these families have given to me. I thank each family that I had the honor of talking to. I will treasure each moment of our time together.
I am sorry I locked the website for a while. I received a negative message that I just wanted to avoid getting while we were away, this is a precious space for me and I do not want Ashleigh's website being used for that. I do have a friend working on it for me.
Every day, every place we go, bring floods of emotions. I walked on the beach with Mackenzie and Howard one night and could help but look at the little foot prints in the sand. I was trying to figure out what size Ashleigh's feet would be. Ashleigh went to the beach last year. She loved the sound of the water and the breeze of the air.
Mackenzie has been keeping us busy. She went to the emergency room a couple of weeks ago. She received IV fluids and some blood work. She started antibiotics for Lyme Disease because of a tick bite that she had back in May.
She also completed her study at Duke for the Lance Armstrong Foundation. She will do it two more times over the next year.
Duke, the dog, is well. We had a fence put up for him, so he can run in the yard.
Howard is going to start a new job soon. He is excited and nervous about it. It will be closer to home and better hours to allow more time for family time.
August 27th will be Mackenzie's first day of school and Ashleigh's 5 year transplant anniversary.
Read Journal History
Hospital Information: Heaven
919-768-0837 - our home
Links: www.huntershope.org information on Krabbe
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