After losing daughter, Woodbury couple creates rare disease foundation

Sarah Mooreland suffered from a rare disease that caused pain unimaginable for an adult, let alone for an infant like herself.

To prevent her fragile skin from literally peeling off and to protect open wounds, her arms and legs and other areas of her body had to be covered in bandages.

The pain was awful and yet could be caused by something as simple as rubbing her arm. She was to participate in a medical treatment that her parents believed was her only hope for a better life but that also was compared to "hell."

Hours ahead of a dangerous but potentially life-saving bone marrow transplant in the summer of 2008, Sarah died of complications. She was not even 10 months old.

Now her parents are dedicating themselves to trying to prevent other children from suffering similar pain, other families from enduring similar grief.

Lonni and Jay Mooreland left their home in California and moved to Woodbury last year, in part to be closer to doctors at the University of Minnesota who had treated Sarah.

They created the Pioneering Unique Cures for Kids (PUCK) foundation to raise awareness of and money for treatment for primarily three rare diseases, including Recessive Dystrophic Epidermolysis Bullosa, which Sarah suffered from.

"I feel like if we can help the doctors make it better for another family, then it will be worth it because I don't want people to have to suffer like we've had to," Lonni said.

PUCK's first fundraiser is a Minneapolis breakfast event Friday, two days ahead of National Rare Disease Day. A run/walk fundraiser is being planned for this summer.

Very rare

The Moorelands had no warning signs that their third child would be born with Recessive Dystrophic Epidermolysis Bullosa, a disease that all but guarantees death by the teenage years or early 20s, if not earlier.

The disease's trademark is the absence of a protein called Collagen Type VII that bonds skin.

"It's like Velcro in the skin," said Dr. Jakub Tolar, a University of Minnesota physician looking for a cure. "It attaches the layers of the skin together, and Sarah and the other children were born with an inability, because of a faulty gene they were born with, to make this protein."

The chance of someone being born with Epidermolysis Bullosa is about 10 in 1 million, Tolar said. The chance of getting the specific type that Sarah had is estimated at just two in 1 million.

Sarah was born at a Folsom, Calif., hospital and spent time in two other California hospitals before going home with her family when she was about six weeks old.

Caring for her was challenging and emotionally draining. Her daughter's skin wounds had to be protected all of the time, the bandages changed frequently. Her arms and legs were bandaged, and each finger was wrapped in gauze.

"Kids with this disease, they suffer their whole life," Lonni said. "They have this pain all of the time."

More on this story is available in the Wednesday, Feb. 24 print edition of the Woodbury Bulletin.

On the Web:

http://childrenscancer.org/puck/

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