www.AlyssaLoudenFund.com
Alyssa is 15 months old. She is beautiful and a warm hearted child. She is the bright spot in our lives and for the most part is always happy. Her smile is infectious and she is one of the most amazing little girls anyone could ever meet. Alyssa is smart, opinionated, spoiled rotten and very much a daddy’s girl! She always has a smile on her face. She loves to take long strolls through town, she's a big fan of Dora and the Backyardigans, she loves to ride on the riding mower with her PawPaw, play in her baby pool & get in to every drawer she can find! She has an amazing smile that will melt your heart instantly. We are so blessed to have her in our lives.
Most of you know that Alyssa has had an enlarged liver for some time now. She went to her specialist for a check up a couple of months ago and they scheduled a liver biopsy and blood work. On 5-15-08 Alyssa was diagnosed with a rare enzyme disease called Hurlers Disease, or MPS 1. Her body does not produce the enzyme that is used to break down the sugar is her body. Main organs that are affected are the liver, spleen, heart and brain. As of now her liver and spleen are enlarged. You may notice her belly is "big" in some of her pictures; that is why.
On June 9th we traveled to Duke University in North Carolina for Alyssa to undergo an Umbilical Cord Blood Transfusion as well as 9 days of high dose chemo therapy. Treatment will last there for 4-6 months.She is still in Phase one, MSP I.
We have recently moved to North Carolina, where Alyssa will be going through numerous treatments along with chemo therapy at DUKE University Medical Center for the next 6 months. As of right now, all we ask is that you keep Alyssa in your prayers. Our family is saddend, but we also have hope that Alyssa can overcome this disease.I understand this is reality, but I feel like Im living a bad dream, and that I should wake up soon. Thank you to everyone who is helping hold me together. If you believe in prayer, please pray for our baby girl.
If you would like to read up on Hurler's, here is a link: http://en.wikipedia.org/wiki/Hurler_syndrome
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Alyssa Clapping
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