Wednesday, January 23, 2013

Addy's Battle with Gaucher Disease Type 2

This is probably the hardest post I've ever had to sit down and write, so excuse me if it's a little jumbled.

Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Addison Bower was diagnosed with Gaucher Disease Type 2 at six months of age. The doctors told her parents that she wouldn't live past two years old. Addy passed away on Friday, at the age of four. We knew this day would come, or had been told anyway, but nothing could prepare us. Addy's mother, Amanda, is one of my best friends. I was at the hospital when Addison was born, and have been there just about every time she was admitted to the hospital. Lots of trips to UVA to visit her and Amanda, lots of tears, lots of prayers - but it was all SO worth it. I am so blessed to have known Addison and been a part of her life.

A little about Gaucher Disease -

Gaucher's (go-SHAYZ) disease occurs when certain harmful fatty substances build to excessive levels in your liver, spleen, lungs, bone marrow and, less commonly, your brain. This accumulation of fatty material in tissues interferes with the normal functioning of the body's organs, and may cause organ enlargement and bone pain. Gaucher's disease is caused by a deficiency of the enzyme glucocerebrosidase, which helps the body metabolize the fatty substance glucocerebroside. The disease is sometimes called glucocerebrosidase deficiency. Type 2. This form of Gaucher's disease is rare and much more severe than the other types. It begins during the first year of life, often developing by 3 months. These babies have brain damage that is extensive and progresses rapidly. There is no cure for Gaucher Disease.

A few pictures of our time with Addy


You can follow Addy's page on Facebook HERE. I created it for her mom a few years ago and help her admin it.

Addy's family night was last night and it was truly amazing to see how many lives she touched in her four short years here with us. We are truly blessed to have a beautiful angel watching over us now. Her celebration of life is at 11:00 today, so please pray for all of her family and friends while we try to find peace with the fact that Addy is in a better place, with God.

10 comments:

  1. Ive never heard of this disease before. What a beautifui baby, so sad but comforting in know HE is in control.

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  2. This brings tears to my eyes. I'm praying for their family - the loss of a child is the worst thing any parent should have to endure!

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  3. I'm so sorry for your loss. Sending hugs.

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  4. How sad :( Lots of hugs and prayers go out to you and her family. She was so beautiful. I love the pictures you chose to share.

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  5. My heart breaks for Amanda. No amount of preparations can prepare anyone to bury their child. I hate that she is now on this awful grief journey. Please pass my info along to her and let her know I am always willing to lend an ear.

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  6. I can't imagine the loss of a child, and I cry just thinking of this poor mother! What a wonderful tribute to her life, and such a beautiful smile!

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  7. What a little angel!
    I couldnt read through this without crying.
    My deepest condolences go to you and your family, but especially Addy's parents.

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  8. Sweets..this was absolutely beautiful! You did an amazing job describing precious Addy. These pictures are perfect! God bless you, Amanda and families! Love you! <3

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  9. Sweets..this was absolutely beautiful! You did an amazing job describing precious Addy. These pictures are perfect! God bless you, Amanda and families! Love you! <3

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