Lung Transplant Could Save Little Lucy's Life
From KSDK TV in Missouri:
Thousands of people are going to bed tonight, waiting for life-saving organ transplants. While many of them are adults, some are just a few months old. Tonight, the story of one child and the journey she and her parents were willing to make in hopes of saving her life.
It's Thursday morning in Denver, Colorado and Lucy Johnson is getting ready for her very first plane ride. At just five months old and with medical problems that would overwhelm any adult, this tiny bundle is leaving the care of Denver's Children's Hospital. Ben Johnson is Lucy's father.
"It's just scary, it's scary and we don't know the outcome," says Johnson.
Baby Lucy is bound for St. Louis, saying farewell to family and friends and a dad who will soon join her.
"We don't know how soon we'll be back, but the way we see it, however long it takes, whatever the outcome is," says Johnson. "It's going to be worth it."
Born in July, six weeks premature, Lucy suffers from a life-threatening condition called Pulmonary Vein Stenosis. Her only hope of a full life, a lung transplant. Read the full news article.
Transplant drug sirolimus shrinks tumors, improves lung function
Study at Cincinnati Children's may hold promise for people with TSC/LAM
CINCINNATI - The drug sirolimus, normally used to help transplant patients fight organ rejection, may eventually be used as a less invasive treatment for a tumor called angiomyolipomata in patients with who would otherwise face surgery. The finding is reported by investigators from Cincinnati Children's Hospital Medical Center and the University of Cincinnati College of Medicine in the Jan.10 edition of The New England Journal of Medicine.
One year of treatment with sirolimus significantly reduced the size of angiomyolipomata by nearly 50 percent in patients with tuberous sclerosis complex (TSC), a rare genetic multi-system disease, or lymphangioleiomyomatosis (LAM), a rare cystic lung disease, according to results of the phase I/II proof-of-concept trial. Sirolimus also improved lung function in the LAM patients. Both TSC and LAM are associated with gene mutations that result in inappropriate activation of mTOR (mammalian target of rapamycin), an enzyme that helps control the growth and proliferation of all cells. Sirolimus inhibits mTOR signaling, researchers said.
"Less invasive therapies are clearly needed to treat the angiomyolipomata that people with TSC and LAM develop, and a drug that maintains or shrinks tumor size may reduce the need for procedures such as surgery," said John Bissler, M.D., lead author of the study and a physician/scientist in the Division of Nephrology and Hypertension at Cincinnati Children's. "Our data suggest that mTOR inhibition with sirolimus may hold promise for treating these and other disease manifestations in patients with TSC and LAM."
In the study, tumor volume in 20 patients treated with sirolimus for 12 months had significant reductions of about 50 percent. In 18 patients evaluated 12 months after sirolimus treatment stopped average tumor volume had increased again to about 85 percent of the original size. Read the full press release.
Birthday at Home
Double lung transplant recipient Garrett Owens celebrates his second birthday at Herndon home with family.
From The Connection Newspapers in Virginia:
On Dec. 28, 2007, the Owens family celebrated their son Garrett’s second birthday at their Herndon home with a Cars cake, decorations and presents. The celebration was special, as Garrett spent his first birthday at Fairfax Hospital, and has spent a majority of last year in medical care that required a double lung transplant.
"It was really nice to be together and at home," said Deborah Owens, Garrett’s mom. Deborah Owens’ company, 720 Strategies, set up a Web site for Garrett and family, which allowed visitors to send a birthday card to Garrett. As of Jan. 3, the family had received 175 cards, many from people they did not know and from people all over the world.
While Garrett entered his third year of life with smiles, the previous year had been difficult for him and stressful for the family. He was rushed to Reston Hospital Center in December 2006, after what seemed to be a common cold caused a fever of 105 degrees and difficulty breathing. Garrett, less than a year old at the time, tested positive for pneumonia and a virus that is a major cause of respiratory illness in children, affecting the lungs and breathing passages. Read the full story.
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