April 13, 2007

Golf tournament seeks to raise funds for treatment of local youth with ‘bubble boy disease’

Rare illness necessitates costly treatment, experimental therapy in Italy

By Ali Abdollahi
Editor

The Villages Golf & Country Club will host the Sebastian Westfall Golf Tournament on May 7. The event is named after Bay Area youth Sebastian Westfall, who suffers from an extremely rare genetic disease called Severe Combined Immunodeficiency (SCID), sometimes called “Bubble Boy Disease.”

Sebastian’s Westfall’s current treatment regimen includes twice weekly enzyme therapy shots in his thighs costing $2,600 each, a monthly IV infusion to give him the antibodies his body does not produce and multiple antibiotics.

Sebastian, who turns 5years old on April 6, has responded well to treatments since birth, but his T-cell count has continued to drop, prompting concerns that without immediate action his health could quickly deteriorate.

Sebastian and his family have been given hope, however. He has been accepted to participate in a gene therapy clinical trial in Milan. The gene therapy procedure, which will be performed by Dr. Allesandro Aluti, will begin with chemotherapy. The doctor then will extract some of Sebastian’s bone marrow, insert a “good gene” into the marrow, then reinsert the marrow in hope that Sebastian’s body will “accept” it. Sebastian will be isolated for two months following the procedure. Only 12 children in the world have undergone this procedure, all of which are still alive.

Sebastian and his parents will travel to Milan in May and stay there for up to six months while he recovers. A portion of the costs will be covered by grants, but the golf tournament was organized as a fundraiser to help Sebastian’s family with the expenses. Sebastian’s father, Chris Westfall, was raised in Almaden, and his mother, Lynette Jones, grew up in Blossom Valley.

Born eight weeks premature, Sebastian was isolated for three months to begin his life after being diagnosed with SCID. “Once he was diagnosed, he had to start serious treatment immediately,” said Jones. Sebastian’s current treatment regimen includes twice weekly enzyme therapy shots in his thighs costing $2,600 each, a monthly IV infusion to give him the antibodies his body does not produce and multiple antibiotics.

“Sebastian always says, ‘I hate my shots,’ and fights with all of his might when we try to give him the shots. It actually takes two people to give him his shot,” said Jones. “I told him we’re going to Italy so that he doesn’t have to get his shots anymore, so that got him really excited to go.”

Though he is usually isolated from other children due to his lack of an immune system, Jones said that he socializes well, but that he often plays alone or socializes with adults. Sebastian attends school on a limited basis, but remains at home from October until April, the months considered “cold and flu” season.

A previous silent auction fundraiser held for Sebastian at the San Jose Rose Garden raised $16,000 to help his family cover costs. Because his family is unsure what the total cost of the procedure and their stay in Italy will be, they have pledged to donate any excess funds raised at the golf tournament to the families of other children suffering from SCID whom they have built relationships with through an international SCID support group.

The golf tournament will include an option to play in the tournament and attend the dinner, and a dinner-only option. For more information on the event, contact Linda Hitchcock at (408) 839-9203 or Karlene Westfall at (408) 218-4097. Donations can also be made to The Sebastian Westfall Fund c/o The First Republic Bank, 1625 The Alameda, Suite 100, San Jose, CA 95126.