|Family holds medical fundraiser for grandson with ‘bubble boy’ disease|
|By Mary Gottschalk
San Jose Mercury News
|Article Launched:09/27/2007 03:11:09 PM PDT|
|Relatives of Sebastian Westfall are rallying around the 5-year-old once again to host another fundraiser to defray costs of a new medical treatment that could extend his life. The event tonight will take place at his grandfather’s office on the sixth floor of 1900 The Alameda.Sebastian has a rare genetic disease called severe combined immunodeficiency (SCID), commonly known as “bubble boy disease.” He lacks an enzyme necessary for normal immune system function, making him vulnerable to infections that other children can easily fight off.
Unlike David Vetter, another child born with SCID and the inspiration for the 1976 made-for-TV film “The Boy in the Plastic Bubble,” Sebastian doesn’t live in a bubble.
However, he does live in a very controlled environment, and his contact with others is also carefully controlled.
Born eight weeks prematurely on April 6, 2002, Sebastian spent the first three months of his life in hospitals.
An early diagnosis identified Sebastian’s condition, allowing doctors to begin treatments that have prolonged his life.
“When Sebastian was first born, we couldn’t take him out of the incubator. When he was in isolation, we had to scrub in and put on a mask. We couldn’t be sick. Sometimes my husband and I could just look through the window,” Lynette Westfall says.
Sebastian’s SCID is linked to an adenosine deaminase enzyme deficiency. Currently he receives two shots a week in his thighs, and every four weeks he must have an IV infusion of antibodies. Additionally, he takes multiple antibiotics.
In an effort to have Sebastian live to adulthood and beyond, his parents are constantly investigating treatments and seeking help everywhere they can.
Their best hope seems to be a gene therapy clinical trial in Milan, Italy.
After Sebastian was accepted into the trial, he and his parents flew to Milan on April 30.
Although he passed all the pre-tests, there was a problem with the quality control on the batch of medicine that he was expected to use.
As it takes weeks to months to make the medicine, which is spread throughout the body much like a virus, and to test it before use, the Westfalls returned to their Bay Area home on June 5.
Now they are waiting to hear if the new medicine is good. If it is, they will return to Italy, perhaps by the end of September. The next phase of treatment in Milan is expected to be a minimum of four months.
The cost of the therapy is expected to be at least $60,000, which is why Sebastian’s grandparents and other relatives and friends have been raising money for months.
Trudy Jones initially crocheted scarves she sold for $25 to raise money for her grandson.
Then her husband Doug opened up his Mortgage Magic office on The Alameda last March for a fundraiser that brought in $20,000.
Grandmother Karlene Westfall organized a golf tournament, which brought in another $5,000.
Now they are all working on the next fundraiser.
“We have a good support team and they’re saying, let’s just keep going and raise money,” Karlene says.
“If we get to the point where we have too much, we’ll give it to someone in this same situation that can use it.”
Karlene says it’s important for people to know “all the good that is coming from this.”
She points toward donations from people who don’t know Sebastian, but still give.
“I want people to know a lot of good is going on in this world.”
The Sebastian Westfall Fundraiser is 5 to 8 p.m. tonight at Mortgage Magic, Suite 900, 1625 The Alameda. The event will include live music, hors d’oeuvres, wine tasting and a silent auction. Tickets are $45 per person. For additional information on Sebastian, visit http://www.sebastiansspace.blogspot.com. Contributions can also be made to the Sebastian Westfall Fund, c/o The First Republic Bank, 1625 The Alameda, Suite 100, San Jose, 95126.