Community raises funds for boy with ‘bubble’ disease

Community raises funds for boy with ‘bubble’ disease

By Mary Gottschalk

Play Time: Sebastian Westfall plays with cars at his home, where he lives in a controlled environment designed to prevent exposure to germs. Sebastian, who has a scab on his nose from falling off his bicycle, has a rare genetic disease called severe combined immunodeficiency (SCID), commonly known as ‘bubble boy disease.’

There’s going to be a big party for Sebastian Westfall on March 8 with music, songs, balloons and good things to eat, but the almost 5-year-old won’t be there.

It’s too dangerous for Sebastian to be around a crowd because he could catch something; an infection that a healthy child can easily weather could be fatal to him.

Sebastian has a rare genetic disease called severe combined immunodeficiency (SCID), commonly known as “bubble boy disease.”

Sebastian’s family, along with a group of business owners along The Alameda, hope the event they are hosting will raise money to defray some of the costs of a new medical treatment.

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.

“This is an autosomal recessive gene,” says Lynette Westfall, Sebastian’s mother. “I’m a carrier and my husband is a carrier. It’s rare and not typically tested for because it’s very rare that two people would carry it. We have a one-in-four chance of having a child with SCID.”

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,” Westfall says.

“I got to hold him a little bit, but there were times I couldn’t hold him because there were too many things like breathing tubes in the way. I would just sit with him for a long time and rock him.”

Westfall has done as much as she can to give her son a normal life, but his condition limits activities most children take for granted.

“He’s attended some preschool, but only from April to October, then we take him out because it’s the cold and flu season,” she says.

Westfall’s husband, Christopher, works from home, and Westfall says her employer, Williams-Sonoma, has been very accommodating.

“I work four 10-hour days. Chris’ mother comes on Monday, and my mom comes Tuesday, Wednesday and Thursday,” she says.

Trudy Jones, Westfall’s mother, calls Sebastian “the apple of my eye, and I’m grateful I get to baby-sit him three times a week.

“He’s a joy. A normal, active child, but we have to be really careful he’s not exposed to anything. We’ve become germaphobic. We wash our hands and carry antibacterial wipes and Purell with us.

“We’re very careful. If we go to a movie theater and someone coughs, I move.”

While Jones says, “Sebastian is fun to be with,” she adds, “it’s sad in many respects because he can’t be around other little children. To me it’s sad, but he doesn’t know. I don’t know how it’s going to be a little later.”

Westfall says her fellow employees are aware of Sebastian’s condition and understand when she can’t socialize with them or shake hands.

“We have to keep our exposure to germs as low as possible,” she says.

Sebastian’s SCID is linked to an adenosine deaminase (ADA) 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.

Westfall says her son often complains about the necessity for shots, “but he’s not at the point where he asks why other kids don’t have to.”

Taking medicine is such an integral and important part of Sebastian’s life that Jones says he assumes it’s the same for everyone else.

“Sometimes he will ask, ‘What did you do last night? Did you take your medicine? Did you brush your teeth?’ That’s his routine,” she says.

Vetter lived for a dozen years in his “bubble,” which was actually a controlled environment room, before leaving the room and contracting a fatal infection.

Sebastian’s family hopes to see him live long beyond the age of 12, into adulthood, which is why they are constantly investigating treatments and seeking help everywhere they can.

As Sebastian’s T-cell count has been dropping, his mother fears if some sort of action isn’t taken soon his health could quickly decline.

After learning of a gene therapy clinical trial in Milan, Italy, the Westfalls applied for inclusion.

Sebastian has been accepted, and the family is planning to travel to Milan in April, where they must stay for approximately six months for the treatment.

Although a portion of the treatment is covered by grants and the Westfalls are hoping their health insurance will cover some of it, they are still going to need money.

“It’s going to cost quite a bit of money to go to Italy, and we don’t want to put more stress on Sebastian’s parents,” says Jones, who is hoping to raise money to defray the $60,000 they expect it will cost to cover whatever insurance doesn’t, as well as the cost of the trip and living expenses.

Jones started her fundraising by crocheting scarves she’s been selling to friends for $25 each and depositing proceeds in the bank account she set up for donations.

After her husband, Doug Jones, hosted an open house at his Mortgage Magic office on The Alameda, Jones says, “I thought maybe we could do a fund-raiser at his office.”

Jones and her sister, Gerda Weber, started working on it and are now hoping at least 200 people attend their party on March 8.

Marlies de Veer and Amy Beasley, singers and guitarists who perform as Blue House, are entertaining for free that evening.

Elegant Events Catering on The Alameda is providing hors d’oeuvres at a discount.

Jones says it’s necessary for both parents to go with their son, and she’s trying to ease stress over money.

“This gene therapy is so experimental, they’ve only done 10 children. These doctors have had a pretty good success rate, but they don’t know if it will be a cure or not. Sebastian is going to need both of his parents,” Jones says.

Westfall says, “If this doesn’t work, Sebastian will continue his treatments, and then his life expectancy wouldn’t be very long. They can’t tell us how long. Each child is different, but to be honest, my husband and I have talked about it and our feeling is it probably wouldn’t be even three more years,” she says.

“It’s taking it a day at a time and trying to make our lives as normal as possible.”

Westfall says she regrets that her son can’t attend the party in his honor.

“Sebastian loves parties; he’s very social,” she says.

“We won’t be at the event, but I’d like to let people know we’re extremely grateful for their support. We can’t thank them in person, but we will be there in spirit.”

The Sebastian Westfall Fundraiser is 5:30 to 8:30 p.m. March 8 at Mortgage Magic, Suite 900, 1625 The Alameda. The event will include live music, hors d’oeuvres and a silent auction. Tickets are $40 per person. Reservations: Trudy Jones by email to tjones4377@aol.com or phone 408.242.4530. 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.

Linkback URL: http://community-newspapers.com/rose_garden/news2.shtml

Advertisements

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: