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About Me

Please visit Alyssa's Official website at;
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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My Blog

Random update & birthday twist!

Hello everyone, just a quick update to let everyone know we're all doing alright. We are all still missing our little sunshine but know that we will take pride in seeing her again one day. We have ord...
Posted by on Mon, 02 Mar 2009 15:21:00 GMT

It’s 2009!!!

We hope everyone had happy holidays! I have been meaning to update, but seems that I have been at a loss for words. 2008 is gone, and Im sad to see it go. Christmas was very hard, especially to b...
Posted by on Wed, 07 Jan 2009 20:05:00 GMT

Lee's Tattoo

Well today was the day for the tattoo. It was more of a hurting day, not just the tattoo but an overall feel of the whole summer. The pain wasnt anything compared to what we went through in Durham. It...
Posted by on Thu, 18 Dec 2008 23:50:00 GMT

Lee's Tattoo

Well today was the day for the tattoo. It was more of a hurting day, not just the tattoo but an overall feel of the whole summer. The pain wasnt anything compared to what we went through in Durham. It...
Posted by on Thu, 18 Dec 2008 23:50:00 GMT

I am blessed.

Since I always update on nothing really positive, I figure today is that day! I've been a little leary on sharing this, but this page is based upon of course Alyssa's journey, and plan to ke...
Posted by on Sat, 13 Dec 2008 22:48:00 GMT

12-09-08

Hello friends, I apologize for the lack of updates...I realize I should do it more often; and I will! The past two months we've dealt with so much and on top of that we're trying to figure out our liv...
Posted by on Tue, 09 Dec 2008 14:20:00 GMT

One month.

Yesterday has made 1 month since Alyssa's passing. I wish I could say it's gotten easier, but the truth is it's just as bad, and sometime's worse. Her service was beautiful, held in a large church in...
Posted by on Mon, 10 Nov 2008 00:37:00 GMT

Funeral Services

First of all we want to thank everyone SO much for all their support, prayers and for being apart of Alyssa's journey. She is truly an inspiration. Our hearts ache that she will no longer be with us o...
Posted by on Sat, 11 Oct 2008 19:07:00 GMT

10-8-08

Alyssa became an angel at around 8:30pm tonight, she went very peacefully.
Posted by on Thu, 09 Oct 2008 03:01:00 GMT

Day +61, PLEASE READ!!!!!

Day +61. Today we met with Alyssa's doctors. We learned that over the last 3 days her lung X-rays have looked worse and very wet. She is also requiring more oxygen. She is very very swollen and her ki...
Posted by on Wed, 08 Oct 2008 00:15:00 GMT