Maxwell was diagnosed in utero, at 20 weeks gestation, with hypoplastic left heart syndrome (HLHS). We were scared and confused since we are two young, healthy people. The prenatal diagnosis gave us the chance to meet with the cardiologists and surgeons prior to Maxwell's birth and make some decisions about what type of treatment we would choose for him. As it turned out, our local children's hospital had recently hired a new surgeon, who specialized in minimally invasive treatment of HLHS.

Hi, my name is Ann Lengel and I have a grandson who was born with HLHS. What a shock after having four other healthy grandchildren! Zachary is my youngest daughter's only child. She took care of herself throughout the whole pregnancy, but was told at about 24 weeks that her son had this condition. We were in shock, to say the least, but I live by the belief that God doesn't give us any more than we can handle.

Emmanuelle Caron Ritchie was born on February 8, 2003, with tetralogy of Fallot. When her mother, Nicole, was 18 weeks pregnant, she went for the routine ultrasound at Northampton OB/Gyn, and found out that there "could be something wrong with the baby's heart." Nicole's doctor decided that she should have a second level ultrasound at 22 weeks at Bay State Hospital in Springfield, MA, where the machines were more precise.

“I wanted to show myself and my kids that no matter what age you are, you can try something outside of your comfort zone. Even if it doesn’t go as you hoped, it’s something to add to your life and a good story to tell,” she said. Somebody else captured the crown when the pageant was held at Hanscom Air Force Base on May 2, 2009, but Settele was glad for the experience.

Taking MS to New Heights. Literally -- Lori Schneider didn’t tell anyone she had Multiple Sclerosis until six months after she received the diagnosis in 1999 (and then it was just family and her best friends). Fast-forward ten years, and anyone who reads the paper, surfs the Web, or watches TV knows. News outlets from BBC to NBC covered Lori’s May 23 climb of Mount Everest, the first successful ascent of the 29,035-foot peak – the tallest in the world -- by someone with MS.

When Cynthia Collington was first diagnosed with MS, in 1997, her doctor told her she’d be in a wheelchair in six months. “I laughed and said, ‘No, I won’t,’” Cynthia recalled “You’re not going to take away my legs—my most valuable assets. I’m not giving up my legs.” She proceeded to walk up to 10 miles a day for 10 years then switched to a tread-climber. “Thirteen years later, I’m still walking, still exercising, still moving,” she says.

Kayla Pinard is everything you imagine a little girl to be. She is a petite little lady, painfully shy to strangers but with a look in her eye that means mischief is lurking. She is such a typical a little girl that it is hard to believe that she ever was anything else. But typical is not how her life began. At her twenty-week ultrasound, the Pinards got news that every parent dreads to hear. Something somehow had gone wrong during her development.

Heather Hinrichsen’s Fight to Win design for Parkinson’s Awareness Month is now featured on a t-shirt being worn by hundreds of people throughout the US. She submitted her design to the PDF Parkinson’s Awareness Month T-Shirt Contest and received over 800 of the 1,900 votes, beating four other designs. What’s the story behind her design and how did she do it?

Heidi Krieger became part of the LLS family when her daughter Grace was diagnosed with leukemia. Here in her words is the story of a survivor, her daughter Grace.

Loring Leeds shares his personal experience as a cancer survivor and AIDS patient. After participating in research at City of Hope he is cancer free and the AIDS virus is undetectable. He and John J. Rossi, Ph.D., chair and professor of molecular biology, discuss the research and its impact.

Jazz singer Felena Bunn shares how the American Kidney Fund saved her life by Kate Howard
March 17, 2010

By age of 25, the glorious voice of Chicago jazz singer Felena Bunn had taken her to every continent on the globe except Africa. She was saving Africa for a special trip, a homecoming of sorts for this African-American woman. A stroke in 2001, at age 26, caused by high blood pressure put the trip on hold. Her doctors couldn’t determine the cause, but recommended Bunn improve her diet, increase exercise and lose weight. So, she did—and the fast-track lifestyle that comes with success in the music business had to slow down, too.

Brooke was diagnosed with PDD-NOS just before she turned 4 years old. I started noticing that there was something off about Brooke before she was even 1 but at that age we just thought she would grow out of these things. Around the age of 2 was when I really started to worry. She wasn’t acting like other kids her age. She wasn’t talking much except for copying words and phrases that she heard all the time from us. She wasn’t communicating her needs and she wasn’t playing the same as other kids or taking an interest in playing with other kids.

Kate Adamson has something important to say to stroke survivors and their families. And a large part of her message is how she is now able to say anything at all. In 1995, at the age of 33, Kate’s life seemed totally in control. A New Zealand native, she was living the American dream — a five bedroom house in a Southern California beach town, a loving husband and two healthy and happy young daughters. She exercised regularly, watched what she ate, and was about to start a personal training business. One day she suddenly felt dizzy. She lost focus and balance. Within minutes, she was unable to speak or move.

“If you ask 10 people on the street—would they know the symptoms [of stroke]? Maybe one,” says Eugene, whose story highlights the need for greater stroke awareness.

June 15^th was an unusual night for this 34 year old Wall Street employee. Instead of immediately going home after work, he first went out to have a drink with coworkers. After arriving home safely, he went to sleep, only to be awoken by a terrible headache. He took a Tylenol and headed back to bed.

I joined the CCA Voices & Buddy program because I want to give back. I have always been an advocate for cancer awareness, but my desire and passion has been heightened since my mother's death. My mother's battle with colon cancer was a journey of overcoming fear with courage and faith.

I was diagnosed with stage II colon cancer (T3N0M0) on August 31, 1999, at the age of 44. I had missed all the warning signs. I had two uncles, one aunt and a cousin who all had colon cancer, and yet I never made the connection. I also had neglected to have a regular full physical for over seven years.

My name is Candace Henley; I am a 41 yr old mother of 5 Daughters
Stage IIB Colon Cancer
Diagnosed: June 27, 2003

I often tell people that I feel like my life has been hit by a hurricane that went undetected. When it was all over, I was left with devastation that hit all corners of my life: physically, emotionally, financially, and psychologically.

Jodie discovered a cancerous tumor in her colon when she had her first colonoscopy at the age of 37. She emphasizes how young people need to know about getting screened. Five years ago, at the age of 37, I was diagnosed with colon cancer after having passed a blood clot on a business trip.I was single, active and had a successful business career. I traveled, was involved in the local social scene, had great friends and a wonderful family connection.

Tom, a frontiersman and adventurer, made an expedition to the South Pole after surviving stage III colon cancer. Tom Davenport is not your average cancer survivor. A self-proclaimed frontiersman, Davenport is a traveler born and bred. For a man who honeymooned in the Arctic Circle and dragged 40-pound tires behind himself while running to stay in shape, it only made sense that after conquering the southern frontier of his colon, he would head to the actual South Pole in Antarctica, the southernmost point on the surface of the Earth.

“The energy generated by these conferences will have a wellness ripple effect throughout all those touched by the attendees when they go home. For sure an event that will ‘improve the lives of people living with mood disorders.’ What a concept. It is re­ally a blessing for me to be here at the conference. I guarantee you that I’ll do a world more good with what I’ve gained from the conference. Thank you! You’re helping many through me.”

~ 2009 conference participant

“You are part of an organization that is a very valu­able resource. When Joe was diagnosed with bipolar disorder, your website was there to give us the information we were so desperate for, as well as to help Joe find a local support group. I am hopeful that someday there will be a real cure for this horrible disease that took him from us way too soon.

Thanks again...I appreciate it.”

~ Sue Kinner

Sharon and Stafford Gaston were extremely excited to learn that they were pregnant with twins. Anxious to see the world, their daughters Norah and Noelle were born 24 weeks later. The doctors gave Norah and Noelle, each weighing about one pound, a slim chance for survival.

Madison Beck was a normal six year old who had just started first grade. Within days of starting the school year her teacher noticed that she was having trouble staying awake in class. Over the next few weeks she became ill and complained of aches. But there was always a simple explanation for each symptom. Being tired was due to low iron. Leg pain was due to learning cartwheels for cheerleading.

In June of 2000, I received shocking news. My doctor walked into my hospital room and calmly told me that I had pancreatic cancer and surgery needed to be performed as soon as possible. He also pointed out that I had jaundice, which explained why the white portions of my eyes were yellow. I remember staring at him in disbelief. I thought, "Oh no, I can't have the big C. Not me!"

At 5 1/2 years old, Ethan is really like any other little boy. He thinks playing with friends is the best part of preschool. He knows if dad says "no", to go ask mom. He loves playing video games, playing outside with his friends, playing soccer, watching football games with dad, and going to the park. Ethan also knows he has something called cystic fibrosis. He knows this is why he has to take pills before he eats, why his sinuses are so bad, why he has so many medications and therapies to do, and why he has special doctors.

My name is Emily and I'm 15 years old and a type 1 diabetic since February 21, 2000. The day I was diagnosed was all a little hazy, I just woke up to go to school, ended up throwing up and it only became worse the whole day. By night I was throwing up every 15 minutes no matter what, which is when I was taken to the hospital. There I waited for a really long time before they took me to see a doctor, but all I remember of that night was lying on a bed and going up an elevator before I woke up the next day in the hospital.

Chloe was born with only 2 heart chambers, no septum which separates the left and right side of the heart. One side of her heart was enlarged and the other was under developed.

My husband and I spent the first few days after the diagnosisat the hospital with Emma. The three of us were plunged into an intense course in biochemistry, physiology, and nutrition. Emma fought tears as she asked the diabetes educator, "Will I die? Will I be able to have children?"

"This was the most important experience I have had since I was first diagnosed -- I finally found others who understood -- even without having to say a thing. I don't feel so alone. " "The conference turned out to be much, much, much better than what I expected. The speakers, the workshops were fantastic. I have a better understanding of my son's illness. Thank you! " "The breakout session choices / options were excellent. ‘Ask the Professional’ was the best ever at a conference. " "The information, the people, the hope! Well done! " "The variety of speakers and peer roundtable sessions were great. " "Really motivational keynotes just excellent! 

Getting regular screening tests is the best way for women to lower their risk of dying from breast cancer. Screening tests can find breast cancer early, when it's most treatable. Unfortunately, access to screening is a major barrier for women who live in rural areas. Susan G. Komen for the Cure currently provides funding to West Virginia University Mary Babb Cancer Center to develop small media campaigns to promote Bonnie’s Bus.

Navigating your way through a complex health system is often times challenging. This is especially true for someone who is uninsured or underinsured. Susan G. Komen for the Cure funds the Primary Care Coalition of Montgomery County, Inc. This collaboration includes the Montgomery County Department of Health and Human Services, 12 non-profit “safety-net” clinics, and five community hospitals.

Over the past twenty years, great improvements have been made in the treatment of breast cancer. As a result, the number of breast cancer survivors continues to rise. There are about 2.5 million survivors alive in the U.S. today! Unfortunately, many women undergoing treatment are hard pressed financially.

9-year-old Jami was recently diagnosed with Crohn’s disease after suffering severe stomach pains and dramatically losing weight. Even though she now has to take several different medications on a daily basis to manage her symptoms, Jami continues to maintain straight A’s in school, play sports like golf, and is driven to make a difference in the battle against Crohn’s and colitis.

Mary Carnahan has more reason than most to feel sorry for herself. She suffers from kidney disease and must be hooked up to a dialysis machine three times weekly. She also has emphysema and needs a walker and infinite reserves of patience to get around. So, when a flood last June ravaged the modest Cedar Rapids home she and her husband Carroll shared, no one would have blamed her if she had belly-ached a bit. But that’s just not who she is: “Oh, I was upset that I lost everything in the house – and the house!” says Carnahan, 70, who had been married 45 years.

Give up a kidney to keep her 29-year-old cousin alive? No problem. Give up Diet Dr. Pepper to prepare for the transplant surgery? Now that was a real sacrifice. Darlene Navarette found out at an annual New Year’s Day family get together at her grandmother’s house that her cousin Holly Miyagawa, needed a kidney transplant. Navarette offered hers on the spot. The successful transplant surgery was performed two months later in March of 2000.

To Joe Abruzzese, Chuck Fruit was more than a friend. He was a hero, who wore his power -- and his pain -- ever so lightly. A top marketing executive at Coca Cola and a kidney transplant recipient, Fruit, who died last year, also happened to be a champion fundraiser and passionate cheerleader in his role as NKF’s Chairman. So when he asked Abruzzese,president of sales for Discovery Communications, to chair the Springtime in New York Gala at Lincoln Center, it was a done deal.

Stories of Caring Katelyn Marie Hall, from Leesburg, Virginia, was born prematurely at 25 weeks, weighing less than a pound and measuring the length of a ballpoint pen. “We were told she had about a 5 percent chance of surviving,” says her dad, Michael. In the newborn intensive care unit (NICU), Katelyn faced many challenges common to babies born too soon. After 5 long months, Ashley and Michael were finally able to bring their daughter home. In many ways, Katelyn is a typical little girl — she loves to run, jump and climb, and play outside with her dog Sequoia.

You could say that Leah is an international messenger. She tries to spread information to women in Kenya about their options when it comes to breast cancer treatment. That’s because Leah knows what it’s like to be diagnosed in a place that lacks resources. She was living in Nairobi when she had a mastectomy in 2000. “It was petrifying. I was scared. I thought I was going to die,” Leah says. Her daughter came to Kenya and shared brochures and other information.

On September 2, 2009, 38 women received breast education and screening services at an A Day for You Program™ in Phoenix, AZ. In preparation for the event, the clinic and the outreach coordinator partnered with a local supermarket to schedule women to participate in the program. At the market, the outreach coordinator came across a woman named Maria, age 62, who had never had a mammogram in her life. 

Joya Delgado Harris was 34 years old with two beautiful young children when she received the stunning news that she had breast cancer. She was overwhelmed with fear about what would happen next. But a middle-of-the-night phone call to Breast Cancer Network of Strength made a crucial difference as she embarked on her breast cancer journey. From that moment forward, she knew she wouldn’t face this frightening disease alone.

When Dorothy was diagnosed with breast cancer it deeply affected her husband Al. After her treatment she became a Peer Counselor for Breast Cancer Network of Strength’s YourShoes™ 24/7 Breast Cancer Support Center. Dorothy says, “After hearing some of the callers who said that ‘I wish I had someone to talk to my husband, because, you know he needs support too."

Louisiana Chapter of The ALS Association Recognizes Area Nurse for Her Contributions to Raising Awareness of Lou Gehrig’s Disease By Stephanie Dufner Registered nurse Niki McWilliams, who owns a small ranch and grows her own vegetables, refuses to let the neurodegenerative muscular disease ALS (amyotrophic lateral sclerosis) affect her spirit. A resident of Breaux Bridge, McWilliams, 36, has lived with ALS since October 2000, yet she remains active in helping The ALS Association’s Louisiana/Mississippi Chapter educate the public and raise awareness of the disease to state legislators.

In addition to teaching college students biology, Arcadia University assistant professor Wes Rose, 37, educates people about the neurodegenerative muscular disease ALS (amyotrophic lateral sclerosis). He has lived with what is commonly referred to as Lou Gehrig’s Disease, which usually has a survival rate of two to five years from the time of diagnosis, since May 2005. The ALS Association’s Greater Philadelphia Chapter has proclaimed Wes Rose and his family one of the families that best exemplifies the spirit of “ALS Across America” for the chapter during ALS Awareness Month in May.

Knoxville resident Carianne Meystrik, 39, a mother of four who formerly managed the hemophilia laboratory at the University of Tennessee Hospital, now depends on family and friends to assist her with daily living needs because she has lost use of her arms and legs due to ALS (amyotrophic lateral sclerosis). Commonly referred to as Lou Gehrig’s Disease, ALS usually has a survival rate of two to five years from the time of diagnosis .

Alexandria denizen Michael Jack has two passions: architectural history and helping others live with ALS. A former editor at the American Institute of Architects and account executive at the public relations firm Porter Novelli, he refuses to allow the neurodegenerative muscular disease ALS (amyotrophic lateral sclerosis) confine him, even though he depends on a motorized wheelchair for mobility and has lost much of his ability to speak.

This is Brody Miller with his mother. Like most 5 year old boys, Brody’s day consists of going to Kindergarten,playing with friends, watching TV, and just being active! To look at Brody, you would never know that a few months ago he was in a doctor’s office, and was facing the possibility of going blind.

The Muscular Dystrophy Association’s 2008 National Goodwill Ambassador is Abbey Umali of Redlands, Calif., a lively and articulate 8-year-old with a form of Charcot-Marie-Tooth disease. “Abbey is precocious and charismatic,” MDA National Chairman Jerry Lewis said.

Karin was the Support Group leader in Edmonds, WA until she moved out of the country. She indicates the Association was very helpful when she was first diagnosed with endometriosis. At that time she bought one of our books and found it immensely valuable. She enjoyed the support group meetings, "It was so special to have a group of women who truly understood what I was going through and could empathize with my situation".

Pamela was diagnosed with severe endometriosis over 20 years ago. She has had many surgeries to "treat" the disease. It has caused her great heartache throughout her life and left her unable to conceive a child. It has also wreaked havoc on her professional and personal life. Pamela writes us to indicate that the Endometriosis Association has been a lifeline for her over the years. She writes, "They have tenaciously worked to promote self-education, raise awareness of the disease and its effects, share knowledge and information, and support those that suffer.

Saundra inquired about this program after reading on the EA website about assistance with travel for members to visit a doctor or have surgery out of their home state if they do not have the financial means to pay. Midwest Airlines has partnered with us to provide this program. Saundra was connected with a doctor in Atlanta who was a part of our physician registry. Saundra had a very positive experience and the surgery was very successful. Her endometriosis pain is now very manageable and she indicates, "I have not felt this good in over 12 years".

My husband, Dr. John Cravero, lost his mother to pancreatic cancer in November 1999. When we first met in the summer of 2007, I could see the impact that the loss of his mom still had on him even 8 years after her passing, so I wanted to learn more about the disease so that I could have a better understanding of what his family had gone though. As we were getting to know each other, we talked a lot about his mom and what they had all experienced following her diagnosis and journey through the disease.

Kaiya received a Prevent Blindness America certified vision screening at her daycare right before her third birthday. The results of the screening indicated a possible problem. Her parents decided to take her to an eye doctor who discovered that her optic nerve was malformed. They began patching Kaiya’s eye in an attempt to restore her vision.

Sharon Belvin was only 22 years old when she learned she had late-stage metastatic melanoma, the most aggressive form of skin cancer. Despite undergoing a series of treatments that left her body ravaged and her spirit exhausted, her cancer kept coming back, each time worse than before.

At age 44, Christine Sable had few worries about her cancer risk, especially since no one in her immediate or extended family had a history of cancer. This mother of two, wife, and full-time real estate professional was leading an active, healthy life. But then she received some shocking news that sent her and her family into a tailspin. After a few months of minor, persisting symptoms—mild abdominal discomfort that she easily could have ignored—Christine made what she thought would be a routine visit to her doctor.

Talyn 2 years old Diagnosis: Talyn was found to suffer from bilateral retinoblastoma in April 2008. Talyn's Story: The first indication that something was wrong with Talyn came during a well baby checkup when she was 10 months old. Talyn’s doctor noticed a white glare in her eyes and sent Talyn and her mom to a specialist. The news was devastating. Talyn suffered from cancerous tumors in both her eyes, known as bilateral retinoblastoma.

Javon and Jakayla 8 and 3 years old Diagnosis: Javon was discovered to have acute lymphoblastic leukemia (ALL) in 2003 and his sister Jakayla was found to suffer from ALL in 2008. Javon and Jakayla's Story: When Javon was 2 years old, he was diagnosed with acute lymphoblastic leukemia, the most common form of childhood cancer. He underwent three years of chemotherapy at St. Jude Children's Research Hospital.

Montana 3 years old, was diagnosed to suffer from acute lymphoblastic leukemia (ALL) in November 2007. Montana's Story: Montana’s parents were immediately concerned when their normally active 2-year-old son suddenly seemed tired all the time. “We could tell something was wrong because he wanted to go to bed at 5 o’clock at night,” Montana’s dad said.

Lindsey was eight years old when her father was diagnosed with Alzheimer’s. “I didn’t know what Alzheimer’s was exactly, but I knew it was bad,” the 14-year-old said. Her father’s onset of Alzheimer’s at the age of 50 changed her family forever. Story: Lindsey was eight years old when her father was diagnosed with Alzheimer’s. “I didn’t know what Alzheimer’s was exactly, but I knew it was bad,” the 14-year-old said. Her father’s onset of Alzheimer’s at the age of 50 changed her family forever.

For Kris, a diagnosis for her forgetfulness came as a relief. She now knew what she was dealing with: Alzheimer's disease. She was only 46. I think there comes a point in everyone’s life when we pause to reflect on the past, realize the present, and look to the future. That happened for me at the age of 46. I’d been married for over 20 years, our son was in his first year of college, I was happy in my job and my husband was looking forward to retirement. We were all healthy, tried to exercise, eat right and live an active life.

“I wasn’t able to attend summer camp because of my asthma”, says Laura Delaney, American Lung Association Volunteer Camp Director. So as an adult, I wanted to make sure all children with asthma had an opportunity to experience a traditional camping experience.

Mikayla is 10 years old and is in the fifth grade at Trinity Christian School. For six years, she has been a Girl Scout and also participates on the cheerleading squad. After ten months of pain and barely able to move, Mikayla was diagnosed with pauciarticular juvenile rheumatoid arthritis when she was 3 years old. 

As an active fundraiser, Sharon Dodge talks about her MS all the time. But she had a shocking moment during a recent conversation. She was diagnosed with MS a dozen years ago. “Wow. I just don’t think about it. It’s just a part of life,” she said. The ability to think about things other than her illness didn’t come easy at first. Sharon was diagnosed at 30 while stationed in Spain with her husband Bill, a naval aviator, and their three-year-old son Tyler.

We’ve all heard it’s better to give than receive — but Cami Walker is finding out just how much better. Walker, a small-business consultant in Los Angeles, was a newlywed, newly diagnosed with MS, and spent much of late 2006 and early 2007 in the hospital with horrific pain. While the docs gave her drugs, a friend gave her an odd bit of advice: Give 29 gifts in 29 days. “I was like, ‘Ooookay, whatever. I can’t even walk. How is giving things away going to help me?’ And she’s like, ‘Just try it, it might help.’” So she did. And it did. Not right away, though. Walker forgot about her friend’s suggestion, then came across her diary entry about it weeks later during a particularly painful, sleepless night.

Staff Sergeant Mark Thompson convinced the Army that having type-1 diabetes should not keep him from serving in Iraq. Thompson, 28, is an Iowa native. He has been married for nine years and has a son, Kyle, who is two years old. He has always had something of a travel bug, and it was this desire to see the world that inspired Thompson to join the Army. That, and the stories he heard from his college roommate -- an older student who had served in the Vietnam War. As Thompson listened, the Army started to sound like an adventure.