Donor found for Poway man’s experimental treatment for rare disease

POWAY — A Poway man afflicted with a life-threatening skin disease has passed a major obstacle on his way to an experimental stem-cell treatment.

Mark Buenconsejo, 51, already has raised money with fundraisers and has successfully fought an insurance company that originally had refused to cover the expenses for a new treatment to stop the effects of systemic scleroderma, a terminal disease that causes skin to tighten, attacks organs and may claim his life within five years.

Now a final piece has fallen into place: a stem cell donor has been identified, clearing the way for his treatment to begin next month in Seattle.

“We were really, really excited and happy,” Buenconsejo said about how he and his wife, Hilary, reacted to the news that a donor had been found. “We knew it was moving again.”

His insurance company originally declined to cover the estimated $350,000 cost for the procedure, but was directed to cover it by the California Department of Managed Care after Buenconsejo filed a complaint with the state.

Local fundraisers earlier this year raised enough money for his three-month stay in Seattle, but nothing could proceed until a donor was found for the bone marrow that contains the needed stem cells. About a month ago, Buenconsejo said he was told no bone marrow donor could be found, but that there was an alternative.

A mother who already has given birth donated her umbilical cord, and it’s a match for Buenconsejo. Umbilical cords sometimes are preserved because the stem cells they contain someday may be used to treat conditions that may occur later in the mother and child, Buenconsejo said.

Since getting the news, Buenconsejo has undergone chemotherapy and has another round scheduled for July 2. On July 13, he will fly to Seattle to undergo two weeks of preparations for the treatment. During that time he will be run through another series of tests, and if all goes well he will begin another round of chemotherapy and radiation treatments before receiving the stem cells.

In July, Hilary Buenconsejo will begin writing regular updates of her husband’s progress during the procedure. Look for them at

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