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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.








Rainbow of Heroes Walk - logo





Where there is Hope, There is Faith

Where there is
Faith...

There are Miracles




"The Brave Little Soul"
by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”


God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. You will be called Ashleigh Ryann.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased...

Journal

Friday, January 23, 2009 8:43 PM CST

"A friend is an angel who lifts us off our feet when our wings have trouble remembering how to fly."

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Hospital Information:

Heaven


919-768-0837 - our home

Links:

www.huntershope.org   information on Krabbe
  
  


 
 

E-mail Author: moocow517@comcast.net

 
 

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