By Suzanne Rhodes

This is what Jami’s babies are up to:

“His twinkle in his eyes you can’t resist.”

“Hunter smiles all the time when you look at him. He has the cutest little face. It lights up his whole face when you smile at him.”

“Quinn says momma and dada, and we are trying to teach him Uh-oh. He says ‘uh, uh, uh,’ and we say ‘ooo.’ It’s so cute!”

Quinn, Liam, and Hunter are triplets, and that is remarkable enough. But what is even more remarkable is that these children, now 16 months old, almost died during Jami’s pregnancy.

She had a rare condition known as Twin-to-Twin Transfusion Syndrome that required urgent medical treatment. Time was of the essence. “On Sunday (April 25) we found out that I had to go to Washington [to Seattle Evergreen Hospital]. They said to come now or I had a 90 percent chance of losing all three babies,” Jami said. “We had to fly there on Tuesday. But it would cost $1,200! We couldn’t afford it.” She and her husband, Patrick, live in Colorado Springs, Colorado.

Patrick’s mother, Penny, found Mercy Medical Airlift on the Internet. “Penny called on Sunday and left a message. She got a call back from Jim Smith. She was crying and happy.”

Smith is MMA’s executive vice president. “In urgent situations like this, we are often able to provide the bridge to potentially life-saving treatment,” he said.

Smith purchased tickets for Jami and Patrick to travel on Tuesday with Alaska Airlines, arriving in time for her afternoon appointment. “He’s very nice,” Jami said. “A huge blessing.”

On Friday morning doctors performed the procedure. “I got a spinal block and could watch on TV while they were doing it. It was kind of neat. I got to see hands, feet and legs. One of the babies was grabbing the camera!” The couple flew back home on May 2.

On July 27, the 23-year-old mother delivered identical triplets: Quinn, Liam and Hunter. “I delivered by C-section six weeks early,” Jami said. She and her husband, Patrick, have another son, Michael, who was only two when his three brothers arrived.

Jami wrote us in August of this year to report that “the boys turned one on July 27 and are thriving, thanks to your program. I was left in tears that night just looking over newborn photos and remembering the scary stuff, and that they would not be here without your program. You gave them the only chance to survive, and I will never forget that!”

by Emily Altmann

Source of growth chart: www.Magic.org (click the image to see it full size)

[Editor’s Note: Emily Altmann is an intern with Mercy Medical Airlift and a graduating senior majoring in English at Virginia Wesleyan College in Norfolk, VA.]

Being born with a rare growth disorder has its share of difficulties.  When you’re in the midst of the middle school years, serious medical issues can be a lot to deal with. Just ask twelve-year-old Jacob of New Lenox, Illinois.  Jacob was born with a rare growth disorder known as Russell-Silver Syndrome (RSS).

At a year old, Jacob was diagnosed with the disease.  Children are born with RSS, and though there’s no scientific test for the disorder, doctors can usually diagnose based upon certain characteristics.  Those with it are typically afflicted by slow growth rate, little to no appetite, low muscle tone, asymmetrical growth, and delayed speech development.

“He’s had a lot of issues dealing with being tiny and certain obstacles he’s had to overcome,” says Jacob’s mother, Kathy.  “But all the intervention has helped tremendously.”

Read more…

John (age 6) and Eleanor (age 8) suffer from a rare genetic disorder, Spinal Muscular Atrophy, that affects motor neurons in the spine and is characterized by progressive weakening. They have taken numerous flights with Mercy Medical Airlift from their home in North Carolina to Stanford, California, where they are enrolled in a clinical trial under the care of Dr. Ching H. Wang. Mercy Medical Airlift is proud and very glad to help children like John and Eleanor receive the treatment they need.

Photo courtesy of MC2 Olivia R. Giger, NAS Fallon Public Affairs Office

Spc. Tim Hall, who lost both legs due to a mortar blast in Afghanistan, celebrated Christmas at home in Hawthorne, Nevada, with his loving family and friends who welcomed him with flags, banners, and signs praising their hometown hero. Mercy Medical Airlift’s partner charity, Air Compassion for Veterans, arranged a round-trip air ambulance flight donated by FedEx (provided fuel) and Omni Air Transport Ambulance with the AeroCare Medical Transport team.

You can learn more about this moving story at

http://www.kolotv.com

Tim is now back at Walter Reed Army Medical Center, continuing his rehabilitation.

James has fun in a leaf pile despite his medical problems.

The Internet is a powerful tool for patients and families seeking information about rare disorders, among all the other things found on the super highway. Through an Internet support group, Ashly and Ronnie discovered Dr. Frank Hanley, the renowned pediatric cardiologist who could help their eight-month old son.

Baby James had turned blue right after he was born. At the University of Maryland Medical Center, testing showed he was suffering from a rare condition known as tetralogy of fallot. James was born with almost no pulmonary artery. He underwent surgery, with the surgeon installing a conduit for the missing artery.

 “The doctors thought it was successful,” Ashly said. “It worked for about three months. But then they noticed that the heart wasn’t doing as well.” Read more…

When Shirley H. was diagnosed with breast cancer this past December, she and her husband, Duane, were devastated. The couple lives in Black, Alabama, near Dothan. Duane’s father has been battling cancer for 10 years, and Shirley’s mother also has the disease, but in her case, none of the different treatment regimens prescribed have succeeded in “getting the cancer under control,” Duane said.

The Cancer Center in Arlington, Texas, was recommended for its high success rate in sending cancer into remission, and Shirley insisted that “she had to go to Texas. She was not willing to play games with this cancer and her life.” Read more…

By: Tim Homa

“I have outlived my prognosis of six months by seven and a half years because I am able to travel through your service,” said Alice.

Alice, 55, uses Mercy Medical Airlift to fly from her home in Ohio to Arkansas, where she receives treatment at the Winthrop Rockefeller Cancer Center. In 2002, after a series of physical problems and the task of caring for her mother who had suffered three strokes, she was diagnosed with nonsecretory multiple myeloma. This is a rare variation of multiple myeloma, a cancer of the plasma cells in bone marrow. With nonsecretory multiple myeloma, the body fails to secrete a protein, and the bone marrow looks normal, allowing the myeloma to travel through the bones undetected.
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A rare disease can dim the human spark but in the case of three Chesapeake, Virginia brothers suffering from RP, or retinitis pigmentosa, the smiles are radiant. Ryan, 20, Justin, 18, and Jordan, 14, take Angel Flights every two years to Harvard Medical Center to be treated for a genetic eye disorder that gradually leads to loss of vision. The boys receive experimental treatment from the nation’s leading RP specialist, Dr. Elliott Berson.

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