State-Journal.com - Update: Girl who suffered from rare disease dies

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Alyssa Brooke Louden, an 18-month-old Frankfort child who suffered from a rare genetic disorder called Hurler's disease, died Wednesday evening at Duke University Medical Center in Durham, N.C.

A story on Alyssa was in The State Journal in June when she was leaving Kentucky for Durham to undergo numerous surgeries and medical treatments including high-dose chemotherapy and an umbilical cord blood transplant " a high-risk procedure.

Funeral arrangements are pending at Harrod Brothers Funeral Home, according to Alyssa's grandfather, Bobby Caudle, a postal/support technician in the Franklin County judge-executive's office.

Alyssa was the daughter of Laura Smith, 22, of Frankfort and Lee Louden, 24, of Eminence. Her parents kept a detailed journal of Alyssa's life in North Carolina on a Web site www.alyssaloudenfund.com.

Wednesday's journal entry said, "Alyssa became an angel at around 8:30 tonight. She went very peacefully."

The day before she died, the family journal said, "Alyssa would not be eligible for a second transplant and we would never put her through that again. Since she is beginning to have more problems than just her kidneys we have decided to keep her comfortable and let her be the angel she is obviously destined to be.
"She has far exceeded the doctors' expectations and fought a good fight. We will never understand why God needs her more than we want her. We just have to put our faith in his hands. I really don't know what on earth we will do without her. This is every parent's worst nightmare.

"Although she will not be with us much longer, she will live in our hearts forever."

Alyssa was diagnosed with Hurler's disease on May 15 at Kosair Children's Hospital in Louisville. Globally, the disease caused by a deficiency in an enzyme occurs in about one in every 100,000 births.

A gospel sing in memory of Alyssa and for the benefit of her family will be 6 p.m. today at Faith Baptist Church, 50 Bridgeport Benson Road.

Singing will be Waldridge Family, Carol Brewer, Stethan Brown, Donna Parker and others.

Alyssa had health insurance under an expensive Cobra plan. And her parents had major expenses, including the rental of an apartment in Durham, after quitting their jobs in Kentucky to be with Alyssa.

12.	Posted by nannasangels October 10, 2008
	My heart breaks for this family. I am a mother of 4 and I lost one at the age of 10 in a fatal wreck. This is the worse thing in the world that a parent has to experience. Thru faith and prayers my family pulled together and got stronger. In April of this year my first granddaughter was diagnosed with Lukemia. Again, I felt like my heart had been ripped out. This community has pulled together and helped in so many ways but the most important is thru prayer. My thoughts & prayers are with this family. Heaven seems to be getting alot of special little angels. Someday we will understand why but until then keep your faith in knowing that you will see her again!!