British teenager raises money for mother waiting for lung transplant

By Sarah Howells, North Devon Gazette

A BARNSTAPLE teenager is travelling the length of Britain in support of his mother as she awaits a lung transplant.

Tom Phillips will be riding 2000 miles to help support his mother Debbie Phillips through her illness

Debbie Phillips, 45, suffers from a genetic lung disease and has been told by doctors that she has only a few years left to live.

The mum-of-three’s only option is a lung transplant and while specialists race to register her on the official waiting list, son Tom, 19, will be embarking on a 2,000-mile road trip to say thank-you to the charity that is supporting his family.

The warehouse worker will be riding from Land’s End to John O’Groats on a 125cc motorbike to raise £1,000 for the British Lung Foundation (BLF).

Tom, who will be joined on the ride by friend Sam Rosevear, said: “This is just my little way of saying thank-you to the BLF for all the support they have given my mum over the last couple of months. We are hoping to cover 210 miles a day on our trip, which should be about four to five hours riding not including traffic.”

As the two friends still have ‘L’ plates and are limited to 60 miles per hour, they will be taking the scenic route along the west coast to avoid motorways. Tom estimates that he and Sam will reach John O’Groats eight to 10 days after mum Debbie waves them off at Land’s End on April 8.

Debbie, who suffers from alpha 1-antitrypsin deficiency, which has resulted in emphysema, said she was awaiting further doctor’s appointments before she could be officially added to the transplant list.

Professor Stephen Spiro, an expert on respiratory medicine, said: “Patients have to undergo a number of psychiatric and physical tests to ensure they are fit for transplant, as it is a huge ordeal to go through.

“Once a patient is on the list, they will receive a beeper. As soon as a compatible donor is found, the beeper will go off and they will have to go straight to the hospital.”

Louise Skinner, events manager at BLF, said: “We are so grateful that Tom and Sam are taking part in this incredible 2,000 mile motorbike ride for the BLF.

“We rely entirely upon voluntary donations and the money they raise will be invested in leading research, campaigns to bring about positive change, and care and support for anyone affected by lung diseases.”

Tom and his mum are also organising a bric-a-brac sale on Saturday, March 10, from 10am-2pm at St John’s Community Hall, Whiddon Valley, to raise funds for the trip. If you have any unwanted items you wish to donate or you would like to help out, please contact Tom on 07826 038236.

If you wish to support Tom and Sam by donating to the BLF, visit Tom’s fund-raising page at www.justgiving.com/Tom-Phillips4.

The boys will also be keeping a blog of their trip on Facebook page, “2000 Mile Motorbike Trip for British Lung Foundation”

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Michael Jackson may have died from lung disorder

By Theresa Tanoos eXaminer.com

The author of a biography on Michael Jackson said that the superstar had a potentially fatal lung condition, which left him in desperate need of an emergency transplant operation to save his life. According to Ian Halperin, who completed a book about Jackson’s life late last year, the pop icon suffered from an Alpha-1 antitrypsin deficiency, as well as emphysema and gastrointestinal bleeding.

“He’s had it for years, but it’s gotten worse,” Halperin told In Touch magazine. “He needs a lung transplant, but may be too weak to go through with it.” Halperin also said that the gastrointestinal bleeding was the most problematic part for Jackson, “It could kill him.”

Earlier this year, Jackson was photographed in a wheelchair. Just a few weeks ago, he was seen wearing a mask while receiving walking assistance.

Alpha-1 antitrypsin deficiency is a rare genetic disorder that results in a low level of alpha-1 antitrypsin protein in the blood. The protein acts as a protective shield to block destructive enzymes from essentially chewing up and destroying lung tissue when there is no protective shield. Such destruction is also called emphysema. It is estimated that only 1 in 5,000 to 1 in 10,000 people have this deficiency in the U.S.

The most common symptom of the deficiency is shortness of breath upon exertion. Activities that used to be easy to perform become more difficult, such as walking up a flight of stairs or exercising. This disease can be devastating and is frequently misdiagnosed as Asthma. In severe cases, patients are unable to perform even routine daily activities like getting dressed or taking a shower. Less severe cases involve not being able to run marathons anymore. It all depends on the level of the deficiency and shortness of breath.

In the case of Michael Jackson and other high-level performers, an Alpha-1 antitrypsin deficiency could significantly affect wind power, which is important for sustaining energy while singing and dancing.

For more info go to Fox News.

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Lung recipient says my life is "really, really good"

Tuesday, February 17, 2009
Woman’s ‘good life’ is all relevant

By Dianne Williamson telegram.com, Worcester, MA

Maryanne Jackson and her son David were 30 miles outside Buffalo yesterday, cruising in David’s Toyota Corolla with the radio off, talking about grandchildren, summer jaunts, and real estate.

“We’re making plans,” David said happily.

For much of Ms. Jackson’s adult life, plans were a luxury reserved for others. It was 1989 when the mother of two was diagnosed with a life-threatening, incurable lung disease that robbed her of the ability to do the simplest things — travel, take walks, even breathe. An oxygen tank was her constant companion, along with a fear that she wouldn’t live long enough to see her new grandson grow.

One year ago, I told you Ms. Jackson’s story. How she and her husband of 20 years divorced four months after her diagnosis. How she picked herself off the floor and got her first full-time job at age 42. How, in 1995, illness forced Ms. Jackson to sell her beloved home near Tatnuck Square and move to a subsidized apartment in Westboro.

Despite everything, she managed to maintain the optimism and sunny disposition that earned her an army of devoted friends.

“I had two choices,” she told me last February. “I could either lie down and die, or get back on my feet … But I have a good life.”

Today, she has a better one. A year ago she was on the waiting list for a double lung transplant; yesterday, she and her son were headed to the Cleveland Clinic so doctors could check on the healthy pair of lungs she received in November.

“It was a very hard process,” Ms. Jackson said. “But the doctors called it a textbook perfect transplant, and I’m getting stronger every day.”

The illness is called Alpha-1 Antitrypsin Deficiency, a genetic disorder in which a protein that helps protect the lungs can’t get into the bloodstream. Last year, the Cleveland Clinic put her on the waiting list for a double transplant and prepared a Lear jet to pick her up at Worcester Regional Airport.

Last May, the first call came. Ms. Jackson was flown to the clinic and prepped for surgery, but the lungs weren’t viable. On Nov. 9, however, she flew back to Ohio and underwent a successful transplant with lungs from a young girl who Ms. Jackson believes died in a car accident. After a year she can learn the identity of the donor if she’s willing, Ms. Jackson said.

In December, while recuperating in Cleveland, Ms. Jackson’s mother died and she was unable to come home for the funeral. Ms. Jackson was born on her mother’s birthday, Feb. 11, and she just turned 62. With the transplant, doctors said she has a 47 percent chance of living five years, although many patients live longer than that.

But it’s the quality of her new life that she marvels at.

“I can hold my grandson,” she said. “I can take a shower without suffocating. I can take a walk. I couldn’t do anything before. There’s not one special thing that I want to do. I just want to have regular days like a normal person.”

Yesterday, her son David was at the wheel for the 10-hour drive to Cleveland. Sons David and Paul have stayed by her side throughout the medical odyssey. David’s son, Cale, is one year old; Paul is expecting his first child in June.

“It’s like I have my mother back,” David said. “A month ago she picked up Cale and it was amazing to see how he cuddled right up to her.”

David doesn’t mind the long drive. He and his mom have talked about the summer trip the family will take to Maine. They talk about children and grandchildren. David told her that he and his wife want to find a home with an in-law apartment, so Ms. Jackson can move in with them. He said he wouldn’t trade the drive for a first-class seat on a luxury jet, because it allows him to reconnect with the woman who overcame enormous challenges to give him and his brother a normal life.

“You know that T-shirt that says, ‘Life is Good?” Ms. Jackson asked. “Well, my life is really, really good. I’m going to have to make a new T-shirt.”

Donations may be sent to the Maryanne Jackson Transplant Fund, Bank of America, 306 Turnpike Road, Westboro, MA 01581.

Merv's note: Maryanne Jackson, when faced with adversity, said “I had two choices, I could either lie down and die, or get back on my feet … But I have a good life.” I highly recommend an amazing video of someone who was faced with unimaginable obstacles but through sheer willpower and a determination to never give up and make the best of what life handed him, succeeded in overcoming his adversity. click here to view

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5 years after transplant, 12-year-old is golden

Every time I read a story about how an organ transplant has transformed a life it warms my heart. This is a wonderful example.

Abby Uranga of Scio Township wears the gold medal she won in the 25-meter freestyle swim for girls 12 to 14 years old at the U.S. Transplant Games in July in PIttsburgh. With her are her parents, Lorie and John, and little brother Nick, 7. Photo: Leisa Thompson

From the Ann Arbor News, Michigan:
By John Mulcahy

If gold medals were awarded for beautiful smiles, Abby Uranga would probably win one every day.

Abby, 12, of Scio Township, has a lot to smile about. She is healthy, has a loving family, and is able to do many things she loves, such as swimming, riding horses at camp and spending time with friends.

She also has a gold medal, but not for smiling. Abby won her medal this summer at the U.S. Transplant Games in Pittsburgh in the 25-meter free-style swim for 12- to 14-year-old girls.

For her to accomplish such a feat seemed nearly impossible five years ago.

She is afflicted with a genetic condition called Alpha-1 antitrypsin deficiency, which caused her liver to make insufficient amounts of a necessary protein and threatened her life. She went on a waiting list and received a new liver in August 2003 at the University of Michigan Medical Center, when she was 7 years old.

That was followed by months of recuperation and special care when she returned to St. Francis of Assisi elementary school. Teachers had to alert Abby's parents whenever another student got sick to help protect her from infection.

But as she recovered, Abby was eager to get active. She joined a school soccer team during her second year back at school and also took gymnastic classes.

This summer, Abbey attended Camp Michitanki, designed for transplant recipients 7 to 15 years old. Created in 2003 by several transplant families, the U-M Transplant Center, several pharmaceutical companies, volunteers and the YMCA, the camp in Oscoda offers activities such as swimming, canoeing and horseback riding. The camp provides medical supervision to assure participants take their medications and have other medical needs met.

"It's just fun to be with kids who are going through the same things you are going through at this point," Abby said of the camp.

There have been setbacks. Abby spent a total of four weeks in the hospital two years ago, and she must constantly be cautious of infections. But overall her life has been good.

"I haven't been in the hospital in two years, and I've been really healthy," Abby said.
Abby's parents, John and Lorie Uranga, who also have a 7-year-old son, Nick, said Abby's experience has taught them a lesson about life.

"Something that started back then is learning to enjoy the moments of life," Lorie Uranga said. "You just don't take it for granted any more."

One of those moments was at the recent Transplant Games.

"To see (Abby's) smile when she came up out of the water and knew she won, that was pretty special," John Uranga said.

It was special to Abby too. "I love swimming and was excited to do something," she said.

The games are sponsored by the National Kidney Foundation for transplant recipients. This year, more than 1,300 athletes competed in 12 sports.

The Urangas think it's important to share their experience and Abby's story to encourage more people to donate organs for transplant.

"What we can do is talk about how we were given the gift of life," Lorie Uranga said. "It is important for us to tell the story of what a great kid (Abby) is."

About 3,000 people in Michigan are waiting for organ transplants of all types, according to Gift of Life Michigan, the state's non-profit organ and tissue donation program.

In 2007, there were 862 organ transplants in Michigan. Nationally, almost 100,000 people are waiting for organ transplants.

Abby and her family are just beginning to write to her donor family - whose identity they do not know - expressing their desire to meet family members if they so desire. The letters will be submitted to Gift of Life Michigan to be forwarded to the donor family.

As she looks ahead, Abby knows that the most important things for her health are to continue taking the medications that keep her body from rejecting her liver, to eat healthy food, get exercise and live a healthy lifestyle. She is entering sixth grade at St. Francis of Assisi school this year and has been looking forward to it.

"I'm excited to go back to school and see all my old friends," she said.

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Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation

Firefighter raising funds for brother's lung transplant

From the Community Times in Maryland:

By SUSAN C. INGRAM
Just two years apart in age, brothers Richard Nichols, 44, and Robert Nichols, 46, have followed similar paths in life.

In October, Richard who lives in Owings Mills, will have clocked 29 years as a volunteer firefighter at stations across the county including, Cowenton, Middle River, Jarrettsville, Liberty Road, and for the last year at Glyndon Volunteer Fire Co.

Robert was a career firefighter with Baltimore County, serving as a paramedic at the Middle River and Hillendale stations. His wife is also a paramedic.

But recently the brothers’ paths diverged when Robert was diagnosed with a lung disorder that is robbing him of the ability to breathe. He was forced to retire from the county fire department last year and go on disability.

“He was diagnosed with Alpha-1 antitrypsin deficiency,” Richard Nichols said.

According to the Alpha-1 Association, a nonprofit education and advocacy group for people with the disorder, the Alpha-1 protein protects the lungs from overproduction of an enzyme that in healthy people destroys damaged cells. But in people with a deficiency, the enzyme can begin damaging healthy lung tissue.

Such people are often misdiagnosed with asthma, emphysema or other breathing disorders, according to the association.

Such was the case with Robert Nichols, who was initially diagnosed with asthma and bronchitis.

“But he’d never had an asthma attack – ever,” his brother Richard said.

Last fall, however, after a severe attack of shortness of breath he went to the emergency room. Through subsequent blood tests he was finally diagnosed with the Alpha-1 deficiency at the beginning of this year.

Since the deficiency can run in families, several family members were checked, including Richard, who discovered that he also has the deficiency but has no symptoms and may never develop any lung problems.

Currently, Robert has less that 50 percent capacity in one lung and less than 60 percent in the other. He is on the list as a candidate for a double lung transplant with University of Maryland Medical Center’s lung transplant program.

Richard, along with Kim Tsirigos of Beef Shakes in Reisterstown, is organizing a benefit bull and shrimp roast July 20 to raise funds for medical expenses.

“We’re all stressed,” Richard Nichols said. “It’s been a twisted nightmare.”

But he said that many people, especially firefighters and their families, have stepped forward to help Robert and his family.

Tsirigos grew up behind Reisterstown Volunteer Fire Co. Her father was a volunteer firefighter, until, she said, “something happened to his lungs.”

“I have a soft spot for firefighters,” Tsirigos said.

The benefit is Sunday, July 20, from 1-6 p.m., at the Exhibition Hall at Timonium Fairgrounds. There will be food, a silent auction, raffles and games. Tickets are $35. For more information, or to make a donation, contact Richard at 410-925-6227 or e-mail rknichols@comcast.net.

For more information, go to Alpha1.org.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network
For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

Your generosity can save up to eight lives through organ donation and enhance another 50 through cornea and tissue donation