Remarkable SCIDS baby turns 24 today

October 22, 2008

Remarkable SCIDS baby turns 24 today

Campbellton – It’s news that any parent would hate to hear. Their child has been diagnosed with a severe illness requiring a transplant that will only prolong their life a few months, maybe a couple of years.

But a 24-year-old Campbellton woman has seemingly beaten the odds and outlived her life expectancy by 17 years and there’s no sign of slowing down.

Kiela MacDougall was the first mismatched bone marrow transplant recipient in North America. As a tiny baby, she wasn’t expected to live long and doctors told her parents she would be lucky to live to the age of seven.

At just six months of age, MacDougall had a haploidentical transplant because she had a disease called SCIDS (Severe Combined Immune Deficiency Syndrome, which is not the same as HIV or AIDs, as some people assumed at the time). She explained on Oct. 9 that doctors told her parents she had no immune system at all. The bone marrow transplant she first got from her father didn’t work because he was not an exact match and a second one was needed when she was just 11 months old.

“They told my parents that I wasn’t likely going to live long,” she said Oct. 9. “But things went well and here I am today, a relatively normal 23-year-old woman.” MacDougall turns 24 today, Oct. 22.

She said that she didn’t want any extra attention for having survived an illness that was a near death sentence in the 1980s. She just wanted people to be aware of the illness and that no matter how down people might be, there are people out there who care.

“I make a trip either every year or every two years to Sick Kids (Toronto’s Sick Children’s Hospital) to for check ups and to visit children who have SCIDS. This is something that parents and kids have to realize can be beaten and I make sure they know that when I visit.”

MacDougall’s parents found out about her illness on Dec. 24, 1984 when she was just two months old. It was the second time they had to deal with the same news. They had another daughter named Jennie who died of SCIDS about three years earlier when she, too, was just an infant.

“It was a punch in their stomach but they stuck with it. They pretty much moved to Toronto when I was really small because I was in the hospital for 13 months. Even when we came home, I had to go to the hospital here for blood work three times a day.”

She said that by the age of six or seven she was pretty much out of the woods and by age eight was off medication.

“I had a relatively normal childhood after that. My parents would keep an eye on me when there was a cold or flu bug going around, but then again, most people watch their kids a little closer then anyway.”

MacDougall said that a CBC documentary was done on her in 1985 that showed she was the first mismatched bone marrow transplant recipient ever in North America. Her parents would have to wear masks and gowns when visiting her in hospital because of her high chance of catching a bug that could endanger her life.

“I’m no one special really, I just want to let people know that they should never give up hope. I enjoy giving them hope and want more people to be aware of SCIDS and other serious illnesses that can be beaten. There’s lots of people out there who need a boost.”

MacDougall has three people she wants to credit for how things have come along.

“I can’t thank my father enough, he’s the one who made the bone marrow donation and of course my mother for staying with me all these years. You couldn’t ask for better parents. I also want to thank my best friend Lori-Anne Kennedy who has also been a great help in keeping me smiling for the last few years.”

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At Magee, cord blood donations translate into hope

October 15, 2008
At Magee, cord blood donations translate into hope
Wednesday, October 15, 2008

Neighbors unite to fight girl’s illness

October 10, 2008

Neighbors unite to fight girl’s illness

By Lee Benson
Deseret News
Published: October 10, 2008
All things considered, the Heaps family of Lehi could have scheduled a better time to face astronomical medical bills.Banks are failing. The stock market is crashing. Congress is bailing out businesses.

But some things can’t wait. And when it became clear in August that their daughter Emily needed another bone marrow transplant, Jill and Matt Heaps did not hesitate, even though they knew it meant costly post-op prescription drugs that make dark alley drug deals look downright affordable.

Some of the pills run as much as $100 a week, and Emily takes as many as 20 pills a day.

The drugs are designed to help Emily’s body regenerate the T and B blood cells that make up an effective immune system.

When Emily was born, she didn’t have any T and B cells. She suffered from a genetic condition called severe combined immunodeficiency, SCID for short. SCID is also known as “Boy in the Bubble Syndrome,” named for young boys who lived inside a bubble to avoid infections and almost certain death.

Emily never lived inside a bubble because by the time she was born, science had discovered that SCID can be countered by bone marrow transplants from family members who have a similar genetic makeup. When she was 2 months old, Emily got bone marrow from her older sister, Jacqueline, and after two and a half years of almost complete isolation — and plenty of drugs — she acquired enough of an immune system that for the first time she was able to go outside of her house. By the age of 5, she started kindergarten.

But she wasn’t growing, and a return visit to the doctors revealed that her body wasn’t regenerating the T and B cells Jacqueline had given her.

It was back to the drawing board, or in this case, the operating table.

In August, 12-year-old Jacqueline submitted to another painful surgery to again donate some of her bone marrow to her little sister.

Now Emily is back in isolation — living in Lehi’s cleanest home and unable to attend first grade with her classmates.

But if all goes well, second grade is a distinct possibility.

“We are very, very hopeful. We’re hoping this time she’ll be cured,” says Emily’s mother, Jill. “The doctors say the odds are really good. But we won’t know for about a year, maybe two.”

In the meantime, there are plenty of pills to buy, and unlike hospital bills that are often capped by insurance companies, the Heaps have no such ceiling on their prescription drug costs.

It isn’t in the Heaps’ nature to make this anyone else’s problem, but their neighbors see the situation differently. They have decided to be the Heaps family’s immune system.

Several of them have banded together to organize a concert tonight to help with Emily’s medical costs. Tamara Bell, a 29-year-old mom with a 6-year-old daughter who loves to play with Emily, is one of them.

“When we found out Emily needed this second operation, we decided we wanted to help support her,” Tamara says. “The concert idea just clicked. It’s something we can do. All sorts of people have volunteered to help.”

The performers will include, among others, Tamara on piano, vocal soloist Ruth Clark, Tabernacle Choir soloist Shane Warby, violinist Leandra Gibson, cellist Breanna Gibson, soprano soloist Tiniel Williams, and a local children’s choir.

“It’s going to be an eclectic sort of program,” Bell says.

Showtime is 7 p.m. at Lehi Jr. High, 700 E. Cedar Hollow Road, and admission is free — but there will be a huge jar for voluntary donations.

“This is such a good cause. Our goal is to raise as much as we possibly can,” says Tamara, who notes that anyone unable to attend can donate at any Bank of American Fork or Utah Community Credit Union branch — under the Emily Heaps Fund.

For their part, the Heaps’ are overwhelmed.

“It’s always uncomfortable when people are providing service,” Jill Heaps says. “But we are so grateful because we know that we need it. And more than that, we know we have all this wonderful support.”

Bailouts can be a beautiful thing.


Lee Benson’s column runs Sunday, Monday, Wednesday and Friday. Please send e-mail to benson@desnews.com and faxes to 801-237-2527.

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Indianapolis ‘Bubble Boy’ Gets Safe Place to Call Home – Angie’s list partners with local companies to provide a healthy home for baby born without an immune system

October 5, 2008

Indianapolis ‘Bubble Boy’ Gets Safe Place to Call Home – Angie’s list partners with local companies to provide a healthy home for baby born without an immune system

Indianapolis – When Sebastian Guarneros was born on June 11, 2007, he was the apple of his parents’ eye. The second-born for Karin and Enrique Guarneros, “Sebi”, as they like to call him, was a welcomed addition to their family. But just five short months later, the Indianapolis parents found out there was something wrong with their perfect little boy. In November 2007, Sebastian started getting sick and never got better. After bouts of bacterial and viral pneumonia and months of tests, doctors at Riley Hospital for Children determined he had Severe Combined Immunodeficiency (SCID) – commonly known as the “bubble boy” disease. This robbed him of an immune system. While their dreams of seeing Sebastian playing t-ball with other kids, or riding his bike down the street started to fade, his parents weren’t ready to give up. Karin Guarneros recalls, “When I heard the diagnosis of SCID, I was devastated and thought ‘I can’t do this,’ but then you do, because it’s your child and you want the best for him.” In addition to the costly medical bills, the Guarneros’ also faced the huge task of modifying their 1,500 square foot home into a safe and healthy house, so Sebastian could live there. A family friend contacted the Angie’s List Wishmakers program for help. “This is the largest Wishmakers project we’ve ever taken on,” said Angie Hicks, founder of Angie’s List (www.angieslist.com). “But when we put out the call for help to our highly rated service companies, within minutes we had businesses volunteering to help.” Because Sebastian’s body can’t tolerate germs, many fibers or other pollutants, local contractors modified the home’s heating and cooling system and replaced the carpet flooring with laminate floors. Additionally, an entire room has been added to help give Sebastian as normal of a life as possible. A ribbon cutting ceremony was held Friday, October 3 to unveil the additions. “When Karin told me that he can’t go outside, he can’t touch the grass, I knew we had to bring the outside in. We designed a room with lots of windows to give it an outdoor feel,” said Geoff Horen, President of the Lifestyle Group. His company is just one of 21 that donated services for the project. The complete list follows: The Lifestyle Group Butz Lumber iFloor Shelby Materials 31-W Insulation Carter-Lee Lumber Jackson Concrete Thomas J Pearson Inc. Alpha Construction Control Tech Luther G Spears Plaster Contractor White Oak Construction Alpha & Omega Painting, Inc Exterior Home Improvement Mike Short Sherwin Williams Bullseye Fence Design Gunderman Designs & Concepts, Inc Paschal Construction Mite-E Ducts Hughes Electrical Connection, LLC Ray’s Trash Sebastian has responded well to treatment and a stem cell transplant. He’s now at home and doctors predict he could be out of isolation within a year. Hicks established the Wishmakers program as a way for Angie’s List to give back to the communities it serves. Since 2004, Angie’s List has partnered with highly rated service providers to grant wishes across the country. Previous Wishmakers projects include: • Removing and properly sealing exterior lead paint and replacing gutters for a Rochester, N.Y. woman who operates a childcare center out of her home. • Repairing a car for a disabled retired Navy veteran in Daytona Beach, Fla. • Finishing flooring and installing doors in the home of a St. Petersburg, Fla. woman in frail health who has spent her retirement fund taking care of her Alzheimer’s-stricken mother. • Improving the kitchen and organizing the home of a Boston, Mass. woman who cares for drug-addicted and HIV positive newborns. • Improving kitchen countertops and installing a portable dishwasher in the home of a legally blind Portland, Ore. man. • Making a Kansas City, Mo. backyard safe for young children, including an infant with a congenital heart defect. • Installing a safety rail and improving gutters and trim of a home a Washington, D.C. woman with Multiple Sclerosis. • Landscaping for a widowed Bellingham, Wash. woman with two young children. ### Angie’s List is where thousands of consumers share their ratings and reviews on local contractors and companies in more than 340 different categories. Currently, more than 650,000 consumers across the U.S. rely on Angie’s List to help them find the right contractor or company for the job they need done. Members have unlimited access to the list via Internet or phone; receive the Angie’s List magazine, which includes articles on home improvement and maintenance, consumer trends and scam alerts; and they can utilize the Angie’s List complaint resolution service. Get more information about Angie’s List at http://www.angieslist.com Read Angie’s blog at http://www.angiehicksblog.com

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