Death of infant daughter powers 51s catcher’s devotion to organ donation causes

Landon Powel

51s catcher Landon Powell posts a photograph of his infant daughter Izzy on his locker in the Cashman Field clubhouse.

Coming off knee surgery in 2009, 51s catcher Landon Powell was working out when he collapsed and went into convulsions. Rushed to a hospital, Powell was diagnosed with autoimmune hepatitis, a rare disease that might eventually require him to undergo a life-saving liver transplant.

Despite having to take medication that caused performance-sapping side effects, Powell persevered and soon made his major league debut for the Oakland Athletics, drilling a two-run double off Seattle Mariners ace Felix Hernandez in his first at-bat.

“It was all downhill after that,” the 31-year-old Powell said facetiously, but only somewhat.

Though the former first-round draft pick went on to catch Dallas Braden’s 2010 perfect game for Oakland — one of 23 in big league history — and was a Pacific Coast League All-Star last year with Oklahoma City, the joy of his feats on the field has been dimmed by personal sadness.

On Jan. 25, Powell’s infant daughter Izzy, one of twins, died at 4½ months old of HLH (hemophagocytic lymphohistiocytosis), a rare disease that afflicts about one in a million Americans.

Izzy Powell, who never left the hospital after being born prematurely Sept. 10, underwent more than 70 transfusions, 14 surgeries, eight weeks of chemotherapy, four spinal taps and three biopsies as she battled the immune disorder that aggressively attacked her sick and healthy cells alike.

“It kept gradually, slowly killing her from the inside out,” Powell said. “The only cure was a bone marrow transplant. Our goal was to get her healthy enough and strong enough to get the bone marrow transplant. We got really close, but it was too much for her to handle.”

Izzy, whose twin sister, Ellie, is healthy, inspired many people during her short life, garnering nearly 40,000 likes on a “Prayers for Izzy” Facebook page.

“She fought hard, and she motivated a lot of people with how strong she was,” said Powell, who also has a 3-year-old son, Holden, with his wife, Ally. “I’m grateful we had her for the time we did, and I’m glad she’s not hurting anymore and she’s in a better place.

“She was a blessing in the time we had her. She was a miracle in a lot of ways. For me, she strengthened my faith and gave me a lot stronger purpose in life. I know I’ll get to see her again in heaven.”

Powell believes Izzy was a miracle baby from the beginning, mainly because the odds were against the couple having more children because of the medication he takes for his own condition. But after two years of trying with fertility treatments, Ally became pregnant again.

“It was a really happy time for us,” Powell said.

Curiously, during Ally’s first ultrasound, doctors saw only one embryo, and during her second, when she was eight weeks pregnant, doctors heard one heartbeat. There was a second fetal sac, but the Powells were told it was empty — a fairly common occurrence known as “vanishing twin syndrome,” in which one of a set of twin fetuses disappears in the uterus during pregnancy.

But when the Powells returned for a 12th-week ultrasound, they and the doctors were stunned by what they saw.

“Sure enough, there was another baby that showed up,” Powell said. “The doctors couldn’t understand it. They didn’t know how Izzy could’ve been there. They were just as amazed as we were.”

Born six weeks early, the sisters stayed in the neonatal intensive care unit for a couple of weeks. Ellie’s condition quickly improved and the couple was able to take her home, but Izzy’s did not, starting a long painful process for her and her parents.

People of strong faith, Landon and Ally Powell have relied on it to help them deal with the tragedy.

“I don’t think I’d be able to function on a daily basis if not (for my faith),” said Powell, who believes Izzy’s struggle was not in vain.

“For me, her purpose was divine,” he said. “My belief is that God put her on earth for a reason. He gave her to my wife and I so we could share our story and hopefully touch people’s lives. To let other people believe what it is to have faith and show how strong she was and how strong we can be in this tragedy, with God to lean on and help you through tough times.

“We prayed that she’d be healed and she is, just not the way we thought she would be. She’s not hurting anymore.”

Perhaps Izzy, who was an organ donor, also can help her parents raise awareness about the importance of being an organ donor.

Inspired by Powell’s own autoimmune illness, in 2010 he and Ally started a “Donors on the Diamond” charity in South Carolina, where they live, and have raised funds and awareness for the cause.

“This was a cause close to our hearts,” said Powell, whose charity benefits Donate Life, whose Nevada chapter is sponsoring tonight’s game at Cashman Field.

Nearly 120,000 people in the U.S. are awaiting life-saving transplants, and 18 Americans die every day before having received a transplant.

Nevada ranks 39th in the nation for organ donations.

“One person’s organs can save up to eight lives,” Powell said. “What better way to leave this world than to be a hero by being an organ donor.”

Reposted from the Review Journal.

‘Jersey Boy’ Jeff Leibow takes NF fight to Washington

Jeff Leibow

Jersey Boy’s Jeff Leibow and his daughter, Emma

In “Jersey Boys,” Jeff Leibow shows his strength of voice several nights a week. Offstage, he’s showing his inner strength in the fight against the disorder that has affected his daughter.

Leibow, who portrays Nick Massi in the Paris Las Vegas production, remains resolute in the fight against Neurofibromatosis, the disease from which his 3 ½-year-old daughter, Emma, suffers. The condition is mostly a mystery to those who suffer from NF and members of the health-care community, a genetic disorder that attacks the central nervous system and disables the body’s tumor suppressor gene. Without warning, tumors can surface and grow on any nerve in the body.

To raise funding to battle NF, Leibow visited Washington, D.C., in February to speak with representatives of every member of Nevada’s congressional delegation. Federal assistance in the fight against NF is provided through Congressionally Directed Medical Research Programs, a Department of Defense initiative established in 1996 to appropriate public funding to support programs battling myriad diseases and disorders. The CDMRP is the only federally backed program fighting NF, and Leibow is garnering support through an online letter-writing campaign to persuade lawmakers to authorize funding for research into treatment for NF.

The link to lend support through the online campaign is the NF official website. Just follow the prompts to sign an online petition urging one of Nevada’s elected officials serving in the House of Representatives (Reps. Dina Titus, Mark Amodei, Joe Heck and Steven Horsford) to support the authorization of federal funding to help fight NF. The deadline for contacting the representative in your district is Friday. Leibow hopes a push from Nevada’s constituents will persuade lawmakers to release money to fight the disorder.

Leibow has organized two benefit shows over the past two years to raise money in the battle against NF, most recently organizing the “NF Hope Concert” at Harrah’s in October. The condition is insidious, as tumors, typically benign, surface anywhere in the body seemingly at random. Just this January, physicians found a benign tumor in Emma’s brain during a routine neurological exam.
“Fortunately for us, and for her, she would not know anything is wrong,” Leibow says. “She is a pretty typical 3 ½-year-old little girl who doesn’t live with a care. She has a spirit that must be innate in kids who have to deal with this.”

Reposted from the Las Vegas Sun.

Young football player with rare disease fulfills dream

Drew Douglas-Cardiff

Drew Douglas-Cardiff from Henderson, NV

It was quite the sight for Amanda Cardiff as she watched her 5-year-old son spike the ball after his first touchdown, something she never thought she’d see because of his rare blood disorder.

“He ran up to me and said: ‘Did you see me? Did you see my touchdown?” Cardiff said.

Despite Drew Douglas-Cardiff’s love for sports, his recent diagnosis of Von Willebrand disease prevents him from partaking in most activities, which made the touchdown all the more memorable.

Drew has been playing for the Tiny Mite Wolves, a Pop Warner football team, since August. He earned the nickname “Little Giant” because, despite being one of the youngest players – the team is composed of 5- to 7-year-olds – and possibly the smallest player, he never let any obstacle get in his way.

While playing, Drew kept having chronic nose bleeds. After 17 nose bleeds in one day, Cardiff, a Henderson resident, took him to a hospital emergency room.

Drew was diagnosed with two rare blood disorders, Von Willebrand type 2N and low factor 8, which affects the body’s ability to clot blood.

“It affects 1 to 2 percent of the population,” Cardiff said.

Of the six types of Von Willebrand disease, Cardiff said, Drew had type 2N, the rarest within that type. The disease means Drew can never play most sports because of the high risk of internal bleeding.

“He can pretty much play golf,” Cardiff said. “No bowling, no baseball, no basketball.”

Ever since Drew could walk, he would chase after or throw a ball around. He was made for sports.

“The other day he said he wanted to be a quarterback for the Cowboys,” Cardiff said.

The news was devastating for Cardiff and Drew, who still can’t comprehend why he can’t play.

“He thinks he is letting his team down,” Cardiff said. “It’s hard to keep it together when he is crying.”

Cardiff could barely muster the words to tell the coaches that her son couldn’t play.

“I figured they would just tell me to hand over his jersey and that would be it,” Cardiff said. “They have only known him two months.”

But to Cardiff’s surprise, that wasn’t it for Drew.

“The biggest thing I emphasize is this is a family,” said Victor Montecerin, coach of the Tiny Mite Wolves and a Henderson resident. “I had an example to set.”

Montecerin, along with coaches Anthony Dalrymple, Josh Miller, Nathan Vargas and Robert Marquis, rallied to make sure Drew was still part of the team.

“We are always looking for people who want to work with children and provide a good learning environment,” Montecerin said. “We serve as a model. We are not just out to teach about sportsmanship and how to be good children.”

On a brisk autumn night, Drew is next to Montecerin and the other coaches during practice with his whistle and play book. He remains a part of the team.

“He leads the stretches for the team,” Montecerin said. “He even weighs in with the team before the games even though he doesn’t play.”

The team didn’t want Drew just to feel included. It decided it wanted to see his dream of scoring a touchdown come true.

At the team’s Oct. 13 game in Pahrump, the coaches arranged for a little surprise in which Drew could score for the Wolves.

“(Montecerin) came to me and asked if it was OK,” Cardiff said. “It is amazing because no one had to say yes. No one had to do this for Drew.”

Montecerin, along with the coaches from the opposing team, made sure none of the children touched Drew as they chased him to the end zone.

“I have been a paramedic for 13 years and have seen some great things,” Montecerin said. “That was the best.”

Cardiff said there wasn’t a dry eye on the field. Drew is still ecstatic about the touchdown.

“He talked about it the entire way home. He still brings it up sometimes,” Cardiff said. “This is a memory he will hold on to.”

Reposted from Henderson View.

‘Disease Adovcacy’ Has Changed How Medical Research Is Funded

Repost from CBS Detroit

ANN ARBOR — Patient-led advocacy has created a shift in the way the United States government prioritizes funding for medical research and has significantly changed the way policymakers think about who benefits the most from these dollars, says a public health researcher at the University of Michigan.

In “Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy,” a paper published in the October issue of the American Sociological Review, Rachel Kahn Best analyzed data on 53 diseases over a 19-year period from 1989 to 2007.

Best, a UM School of Public Health fellow in the Robert Wood Johnson Education Scholars in Health Policy Research Program, found that those diseases tied to strong advocacy organizations received millions of dollars more in research funding over the period than others whose advocates were not as strong. She also found an increasing number of these organizations, from about 400 large nonprofits working on disease advocacy in the early 1990s to more than 1,000 by 2003.

In addition, Best noted another fundamental shift in policy brought about by advocacy. Where policymakers once focused on providing dollars to the scientists who made the best case for funding — with the general population thought of as the beneficiaries of their research — the government began to think of patients with particular diseases as the recipients of the research funds. This resulted in funding based on “perceived moral worthiness.

(Read entire article…)