The family of a Folsom girl awaiting a bone marrow transplant for a rare skin disease has established a fund to support research into possible cures.
"I just feel so grateful," said Jay Mooreland, whose 9-month-old daughter, Sarah, is being treated in Minneapolis.
Sarah's disease, a recessive dystrophic form of epidermolysis bullosa, or EB, causes the skin and the linings of the mouth, throat and stomach to blister and wear away. It has no proven cure.
Yet while Sarah's family is gambling on a potential cure that has been tried on just two other children, Mooreland said the help and support that have come their way have been overwhelming.
The family's insurer, Blue Cross, agreed without a fight to cover Sarah's treatment and much of the cost of the family of five's stay in Minnesota, Jay Mooreland said.
His employer, Merrill Lynch, gave him space in its Minneapolis office so he can continue his work as a financial planner.
The family's church, the Church of Jesus Christ of Latter-day Saints in Folsom, has come through with prayers and supportive friends.
So when friends and relatives stepped forward hoping to help Sarah, the Moorelands asked them instead to aid doctors and researchers who have been working with limited funds to combat EB.
The family created the Sarah Rose Mooreland Fund for Epidermolysis Bullosa Research, which is being administered by the Minnesota Medical Foundation, a nonprofit group that supports health-related research and education at the University of Minnesota.
Sarah's fund is earmarked to support "novel therapeutic interventions" for the disease, under the guidance of Dr. John Wagner, who is trying to cure EB with the stem cells contained in transplanted bone marrow.
Mooreland hopes that Wagner will be so successful that he ultimately gets federal funding for EB research. If that happens, the fund would also help families who couldn't otherwise afford treatment, Mooreland said.
Call The Bee's Carrie Peyton Dahlberg, (916) 321-1086.
