Riley Corbitt - Heavens Newest Angel

I received some really sad news yesterday. My cousins little girl Riley passed away. The Lord had put her here on this earth for a while to touch the hearts of many but He was ready for her to come to Him now. She passed away around 1:30 yesterday afternoon. I did not get to see Riley as much as I would like to have living away from my hometown. You could always ask about her & everyone could give you updates.

Here is an article that was in my hometown newspaper about her explaining her disease.

The Daily Sentinel
Published March 25, 2006
Roy and Paula Corbitt of Woodville are living every parent’s worst nightmare. Instead of watching their beautiful 3-year-old daughter, Riley, grow and thrive each day, learning new skills and exploring the world around her, they are watching their child regress, slowly losing the milestones she had already reached.

Paula & Riley

Riley is in the grips of a degenerative disease that has ravaged her body for all of her young life and is expected to claim her life within the next few years.Riley has fought hard from the beginning of her life. Born at 35 weeks, she turned an ash gray color the day before she was supposed to come home from the hospital. Riley was moved to the neonatal unit for special medical attention. During this period, the baby would suddenly stop breathing. She was examined and found to have jaundice with an enlarged liver and spleen.

When the doctors were able to control her jaundice, Riley was sent home and followed up with a gastrologist in Huntsville. At the age of 2 months, Riley was sent to Children’s Hospital in Birmingham where doctors repaired three hernias and performed a liver biopsy. The doctor diagnosed Riley as having neonatal hepatitis. Her parents were told she would outgrow the condition within a year, and doctors prescribed medications.

She never outgrew her symptoms; in fact, they only grew worse.Shortly before Riley turned 2, doctors recommended that she receive a liver transplant because her condition had turned into cirrhosis. Paula researched her options and requested that Riley be sent to Emory for the transplant. Her parents met with the transplant team and were preparing for the operation when Dr. Romero decided to test her for Niemann-Pick’s disease since Riley had several symptoms.

The four main symptoms of Niemann-Pick’s disease are an enlarged lived, an enlarged spleen, jaundice and palsy of the eyes. The only symptom that Riley does not exhibit is the palsy.Riley underwent a liver biopsy and skin biopsy and was diagnosed with Niemann-Pick’s disease a little over a month later.

Paula explained that Niemann-Pick’s disease is a genetic disorder. The only way for a child to have the disease is for both parents to carry the gene for it, and even then there is only a 25 percent chance that the child will have the disease.

There are also different types of the disease, which are characterized from A to C, depending on life expectancy. For example, children with Type A will normally die before reaching age 2. Riley has Type C, which means she only has a life expectancy of 5 or 10 years.

The disease is characterized by the inability to metabolize cholesterol and other lipids properly within cells. Consequently, excessive amounts of cholesterol and other lipids accumulate in the liver, spleen and brain, causing the brain and other organs to deteriorate.

Paula said the disease is already progressing rapidly in Riley. At her MRI in October, the doctor told them that lesions have begun forming on her brain, signifying damage and loss of brain tissue.

Her parents have already begun to notice her decline. A year ago, she was able to walk unassisted, but now she needs support to be able to move around. Her speech is also deteriorating.“Riley won’t go forward anymore,” Paula said. “She is starting to go backward.”

At her March 7 appointment, there was no new loss of brain tissue but the muscles in her back and throat have begun to weaken. Her spleen is now enlarged to her navel.

The disease also causes Riley to have tremors which are helped by an experimental drug called Cevesca. Although the drug is not FDA approved, it is her only hope in slowing the storage of cholesterol on her brain. Paula said that although the side effects cause additional problems for Riley, the medication does help control the tremors.

The future does not hold much hope for Riley. Doctors say she will eventually be bed-ridden and need a feeding tube, unable to walk, talk, or even swallow. Niemann-Pick’s disease is incurable. The doctors have offered her parents no hope for a recovery. “It slowly kills everything,” Paula said. “We were told all there is (to help) is the Cevesca, but they don’t know if it will help.” A liver transplant is not even an option now. “They won’t giver her a liver transplant because they won’t give a healthy liver to a child who won’t get any better,” Paula said.

In the midst of this seemingly hopeless situation, there is joy and a great deal of love. Riley and her family recently lived out every child’s dream – going to Disney World – through the Make A Wish and Give Kids the World foundations. Paula said Riley had a wonderful time, and she especially enjoyed riding the carousel and train.

The family also plans to travel to Dallas in August for the National Niemann-Pick’s Disease Foundation Family Conference. There, they will be able to meet with doctors and researchers, as well as other families who are living with the disease. The community is also embracing Riley and trying to raise money to help the family deal with medical expenses. Just one bottle of Cevesca costs $3,000, and that does not even begin to take into account the medical expenses that have added up during Riley’s young life.

A benefit for Riley will be held April 8 at Woodville High School gymnasium from noon until 8 p.m. There will be a gospel and bluegrass concert, a raffle, chili supper, cake auction and silent auction. Many items have been donated for the auction, including an Alabama football, a Shaun Alexander football, grills, quilts, televisions and much more. A special fund has also been set up at Regions Bank for monetary donations for Riley. The money will be used to help pay for her medical expenses.

Riley has a way of touching everyone’s heart. Despite the gravity of the situation and her physical decline, Riley wakes up every morning with a smile on her face and is a delight in the lives of everyone who knows her – or just has the pleasure of meeting her.

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This is the statement I read that sticks to me each time I think of Riley.

"Riley has a way of touching everyone’s heart.

Despite the gravity of the situation and her physical decline, Riley wakes up every morning with a smile on her face and is a delight in the lives of everyone who knows her – or just has the pleasure of meeting her."

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