Family praises House vote on stem cell bill
June 9, 2007
Heber residents Linda and Leo Witt were praying for a miracle last month when their twins died nine hours apart. The 9-year-old brothers had spent six years battling Batten Disease, a rare neurological disorder that caused blindness and took away their ability to walk.
"It’s always fatal," said Leo Witt about the illness that caused severe seizures. The boys died of respiratory failure in May.
But the fraternal twins enjoyed life, he insists, up until two months ago when blood had to be siphoned from their lungs and machines were needed to help them breathe.
"They couldn’t see, sitting in a dark world and their only input was coming from their family and the ones who loved them enough to help," Leo lamented. "They were so sick."
A week before Logan and Tyrel Witt died, their parents, were contacted by researchers in Oregon investigating ways to treat Batten Disease with adult stem cells.
"There was hope for them," Leo said.
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Misaligned genetic material caused the late-infantile form of Batten Disease, the father explained.
To treat violent seizures the Witts tried nearly 50 different medications.
"As far as stopping the disease in its tracks, or keeping it from being able to actually occur, you’re talking either some type of gene therapy or stem cell therapy that could even be introduced into a fetus still in the womb to stop the disease from actually taking hold," Leo Witt said.
Sadly, time for his boys ran out. They were dying in hospice care the day Oregon researchers offered to start treating the twins using stem cells.
"I had to say, I’m sorry, you’re too late. They’re too ill, they wouldn’t survive," Leo Witt said. "Had the research funding been available perhaps a year or so earlier [the twins] still would have been in good enough shape that the option would have been available to us."
The Witts believe controversial embryonic stem cells, harvested from human embryos, could have helped their sons live longer, more fulfilling lives.
"You get a bit frustrated and you almost want to say, come into my home and help me suction the blood and mucus from my child’s lungs and tell me that if this was your child, you wouldn’t at least look into this," Leo Witt said.
Because embryonic stem cells are used to replace many cells in the body, researchers are optimistic the cells could help treat diseases like diabetes, Alzheimer’s and Parkinson’s.
Adult stem cells, like those found in bone marrow or the blood of an umbilical cord, are less versatile, Witt explained.
"Would it not be just as well for those of us who mark the donation box on our driver’s licenses for our eyes or our livers when we pass, that as parents we at least have an opportunity to mark a donation box for a miscarried child, that embryo," he suggests. "The way most of the politicians are floating, that’s not an option. Part of it is misconception and lack of understanding."
Stem cells on Capitol Hill
Many who are against stem cell research believe it amounts to destroying human lives for the sake of experimentation.
On Thursday, science and politics collided on Capitol Hill when the Democratically-controlled Congress voted 247-176 to pass a bill to loosen regulations on federally funded embryonic stem cell research.
But House members lacked the two-thirds vote necessary to prevent President Bush from vetoing the legislation as he did a similar bill in 2006.
"The fact of the matter is, we experiment with human life every day in every form of research," explained U.S. Sen. Orrin Hatch, R-Utah, in a telephone interview Tuesday.
Hatch along with Sen. Bob Bennett, R-Utah, support looser regulations for federally funded embryonic stem cell research.
"The administration has prohibited further research on embryonic stem cells," Hatch said. "There are legitimate arguments on both sides. I just don’t think the other side’s arguments are very good."
Doctors already use adult stem cells to treat diseases like leukemia and sickle-cell anemia, the senator said.
"Embryonic stem cells were only discovered in 1998, yet, scientists today believe they yield the most promise for finding treatments and cures for patients," Hatch said. "Embryonic stem cells can be reconfigured into upwards of 220 different forms of human tissue that adult stem cells cannot."
Embryonic stem cells aren’t as developed as adult stem cells and are more versatile for repairing the body. States and private companies can fund embryonic stem cell research, but federal funding is restricted to cell lines in existence as of 2001, a limitation legislation passed by the House this week would lift.
"They give you an opportunity to work with a wide variety of maladies," Hatch said adding that embryonic stem cell research could bring a cure for juvenile diabetes.
The Senate cleared the Stem Cell Research Enhancement Act passed Thursday by the House, but also lacked the two-thirds vote necessary to prevent Bush from vetoing the bill.
"Each year, support grows for the use of federal funds to support ethical embryonic stem cell research. This year that support may be strong enough finally to enact legislation," Hatch said.
But Democratic Rep. Jim Matheson, who represents Heber, is Utah’s only congressman who voted to expand embryonic stem cell research. Republican Reps. Chris Cannon and Rob Bishop, who represents Summit County, voted against the bill.
"This research holds tremendous promise for curing terrible diseases such as Alzheimer’s, Parkinson’s and diabetes, that cause so much heartbreak and suffering for thousands of Utah families," said Matheson in a press release. "Families are clinging to the hope that this research will proceed and that those they love will see some benefit."
Still, Scott Parker, a spokesman for Bishop, insisted that Bishop, while opposing experimentation with embryonic stem cells, supports further research using adult stem cells that "has reaped more benefits to date."
"It’s a definite moral gray area, but this bill wasn’t even about how ethical or viable embryonic stem cell research may be," Parker said. "That research can legally take place right now, and it is, and it’s not producing results. I worry that politicians who make speculative promises of what cures might possibly come from this type of research are unfairly giving false hope."
Leo Witt replied, "I don’t believe that I or anyone I know would say, oh yes, let’s start a baby farm and kill babies so we can get stem cells. But when you’re sitting in your home caring for someone who is suffering, you’re much more willing to reach out and look for any way to help them."
Twins ‘born at the wrong time’
Because Linda Witt knows Batten Disease research involving stem cells is in the works, it’s difficult knowing her sons "were born at the wrong time for this disease," she said.
"It’s a very rare disease and the big companies don’t make money making medicine or doing research for it," said Leo Witt.
Bush’s limiting of embryonic stem cell research to only existing cell lines means scientists who create new embryos to harvest stem cells risk losing federal research grants, Hatch lamented.
"We need to dramatically expand federal funding for embryonic stem cell research," said the senator. "Most scientists believe that embryonic stem cell therapy could have helped with Batten Disease. It’s tragic."
Restrictions on stem cell research in the United States contributed to the deaths of her sons, Linda Witt claimed.
"I just had to focus on taking care of my children and was hoping someone else out there was trying to discover a way to cure this disease," she said.
Her hands were full making sure Wasatch School District officials didn’t violate her boys’ civil rights.
"They had a right to go to school," Linda Witt said about attempts by administrators to quit bussing the boys after they needed oxygen machines. "It was coming from the top people who didn’t know what their own rules were. They were totally ignorant."
According to Leo Witt, "Linda educated the educators."
"Linda pushed and pushed and pushed when the schools began to decide that this might be a liability," he said. "She was a mom who stuck to her guns."
Meanwhile, the twins likely taught their peers lots at J.R. Smith Elementary School in Heber.
"They taught empathy, they taught charity and they taught those things without saying a word," Linda Witt beamed. "You learn patience. They teach you love."
Boys did everything together
In their lives Logan and Tyrel hardly left each other’s side, so their mother says she knew the sick twins would die within hours of each other.
"I knew that’s how it was going to be because those little guys did everything together," Linda Witt said. "They would both start laughing at the same time and we couldn’t hear them, but they were talking to each other. They never developed words like you or I use."
The twins were nicknamed "search and destroy" and loved to roughhouse as children until symptoms of Batten Disease emerged at age 3.
"They were little hellions," Linda Witt said. "They were normal boys. They were just rambunctious little toddlers who tried to figure out how to get away from mom."