State-Journal.com - Her fight has just begun

Photo By Photo by Renee Lewis Photography Alyssa Brooke Louden, 14 months, has Hurler’s disease, a rare, genetic disorder caused by a deficiency in an enzyme.

Fourteen-month-old Alyssa Brooke Louden knows she's loved. She knows she's been on a long ride in a car this week to a new temporary home with her parents.

Fortunately, however, she doesn't know the long, difficult road that's ahead at Duke University Medical Center in Durham, N.C.

Alyssa has Hurler's disease, a rare, genetic disorder caused by a deficiency in an enzyme. Globally, the disease occurs in about one in every 100,000 births.

It's also known as mucopolysaccharidosis type I, or MPS I. Hurler's disease was named for a German pediatrician, Gertrud Hurler, who first described the disease in 1919.

Symptoms appear during childhood and organ damage can lead to an early death.

Alyssa is the daughter of Laura Smith, 22, of Frankfort, and Lee Louden, 24, of Eminence.

Smith was an employee of the Franklin County Regional Jail, but had to quit to go to North Carolina. Louden, who was laid off recently from a job in Winchester, will be searching for employment in the Durham area.

Alyssa has health insurance under a temporary and expensive Cobra plan, but her parents will be facing major expenses, including the rental of an apartment while in Durham.

"Alyssa has had an enlarged liver since she was six months old," says her maternal grandmother, Carol Caudle, of Frankfort.

After tests, blood work and a liver biopsy, she was diagnosed with Hurler's on May 15 at Kosair Children's Hospital in Louisville.

She and her parents will be staying in the Durham area for four to six months.

Alyssa is now in the first of two weeks of medical evaluations at Duke. Then she will have her tonsils removed and more blood work.

That will be followed by nine days of high-dose chemotherapy to destroy her immune and blood system, according to her mother. Then the day after her last chemo treatment, Alyssa will undergo an umbilical cord blood transplant " a high-risk procedure.

She will have to stay in the hospital about 50 days. After being discharged she and her parents will stay in an apartment near Duke. Initially she will be seen daily at the Duke clinic, then several times a week, then weekly until the 100th day following the transplant.

Heart and lung tests will begin then. If there're no complications, the Duke medical staff will arrange for her return to Frankfort for medical care with reports being sent back to Duke.

"She's a loving little child," says Carol Caudle. "She has a beautiful smile. She's energetic. She gets in her walker and walks everywhere. She loves to watch TV. Her favorite program is "Dora and the Backyardigans.'

"I had never heard of this disease. It's sad she has to go through all of this. She's so little. But we're going to get it taken care of. With all of the hopes and prayers, I know she's going to pull through."

Her grandfather, Bobby Caudle " a postal/support technician in the county judge-executive's office " says he's optimistic.

"It's going to be a long, tough battle, but we're hoping everything goes the right way," he said. "And we're really thankful to all the people who have been so supportive."

The Caudles will be going to Durham the weekend after the yard sale to visit their granddaughter and her parents. Then Carol Caudle will return to North Carolina for a longer stay when Alyssa's chemo treatments begin.

"That's when it's going to really get tough," Carol said.

Fundraiser for Alyssa
A multifamily yard sale as a fundraiser for Frankfort's Alyssa Brooke Louden will be 8 a.m. to 3 p.m. Saturday at the American Legion Post 7 on Versailles Road. All proceeds will go to Alyssa and her parents. "We will have raffles, gift certificates to various restaurants in town, a Paul Sawyier print and a nice gift donated from Wilson's Nursery," said Alyssa's grandmother, Carol Caudle. Alyssa is now at Duke University Medical Center where she will undergo four to six months of treatments for Hurler's disease, a rare genetic disorder that can cause early death due to organ damage.

9.	Posted by ibdeb June 16, 2008
	I had tears in my eyes as I read this, and I know how scary and rough the journey through multiple doctors and hospitals is on a family. My son is considered an "extreme preemie" and is within the 2% that survive when born at his gestational age. We have spent the last few years in and out of hospitals and various medical arenas since, both in and out of state. We had someone that brought us "fun bags", similiar it sounds to the idea that cnitzken is doing, and it was WONDERFUL to get. Not only did they contain stuff to help us through the many days, but we were able to give to those parents in the hospital around us as well. It really is amazing how something as mundane as a cross word puzzle book can help when you are waiting through endless hours of testing and so forth. To the Smith family, know that you and your daughter are in all of our thoughts and prayers and I learned that a positive attitude can go just as far, if not farther to help achieve the goals you want. Never give up, no matter how bleak it may seem, and always remember you have to be her advocate first and foremost and fight for everything you feel she needs. I hope we see an article before to long with her smiling face and the update that she's doing so much better.