Eight-year-old Matthew was born with only half of his heart, a condition known as hypoplastic left heart syndrome. After a series of heart surgeries at MUSC Children's Hospital in Charleston, SC, Matthew is living the life of any normal child. Matthew has big dreams for the future and would like to be an astronaut, teacher and pumpkin farmer when he grows up. Matthew is also a natural fundraiser and inspired his school to raise $3,002.33 for the children treated at MUSC Children's Hospital.
Matthew and his family talk about health care reform at Family Advocacy Day.
Greg is an extremely social, engaging 19-year-old whose spirit and courage is admired by everyone who knows him. He is passionate about his many hobbies including the Portland Pirates hockey team, horseback riding, bagpipes and U.S. and British military bands. As a result of the ischemic strokes that occurred because of his diagnosis of Moyamoya syndrome, Greg required two very specialized neurosurgeries, as well as a 13-hour orthopedic surgery to alleviate the severe spasticity of his leg and hip muscles that resulted from repeated strokes. All three of these surgeries and many other related treatments were performed at Children’s Hospital Boston. After extensive physical therapy to learn how to walk again, Greg traveled to London and Edinburgh. As New Englanders, Greg and his family are very fortunate to have access to Children’s.
Greg and his family talk about health care reform at Family Advocacy Day.
Rebekah is a sweet 4-year-old who loves school, being outdoors, horseback riding and Dora the Explorer. Rebekah was born about seven weeks early, weighing only 4 pounds, 6 ounces. When she left the hospital three days later, her weight had dropped to 4 pounds. Rebekah’s low muscle tone causes her difficulty in eating and to tire easily. Early intervention services have offered physical, occupational and speech therapy that have been helpful to Rebekah. She continues to receive treatment through Johnston Public Schools and Greenlock Therapeutic Riding Center in Rehoboth, MA. Children’s Hospital Boston has offered Rebekah’s family hope in receiving medical treatment and not giving up. Every blood work test that comes back normal is one more step toward learning what Rebekah is facing.
Rebekah and her family talk about health care reform at Family Advocacy Day.
Sean is a fun loving 6-year-old boy who enjoys creative play such as make believe and theatre. He has lots of fun doing this with his three younger siblings. He also likes playing soccer and baseball with family and friends. When Sean’s mother was pregnant, the doctors discovered Sean had cysts on his lungs. After birth he was closely monitored by the doctors. After undergoing a thorough medical examination at Maria Fareri Children’s Hospital at Westchester Medical Center at age 2, Sean was diagnosed with pleural pulmonary blastoma. He underwent chemotherapy, radiation treatment and stem cell transplants. Thanks to Maria Fareri, Sean is in remission now and very much enjoys school and playing with his family and friends.
Sean and his family talk about health care reform at Family Advocacy Day.
Alyson and Andrea, 8 year-old identical twins, juggle a full schedule of activities – softball, junior varsity jump rope, bike riding, swimming, reading, and singing in their church choir. Somehow, the girls must find at least an hour each day for a treatment machine they call “Tigger” that pounds their chests clear of mucus, taking nebulizer treatments, and swallowing 20 some pills each. Alyson and Andrea do these things because they have been living with the genetic disease cystic fibrosis since birth. From the time of diagnosis, the family has felt a part of the team with the Pulmonary Unit at Nationwide Children’s Hospital. What their parents like best about the girls’ care is the emphasis on prevention through nutrition, medication, and other cutting-edge therapies. Through the help of Nationwide Children’s Hospital proactive care and treatment, coupled with the strength and support of their loving family, Alyson and Andrea are able to live longer, stronger lives.
Alyson and Andrea and their dad talk about health care reform at Family Advocacy Day.
Jakob is an adorable and energetic 3-year-old boy who first visited Children’s Hospital Boston when he was only a few hours old. He was born with a bilateral complete cleft lip and palate but was rushed to Boston just after his birth in New Hampshire because of an emergency breathing problem, pneumothorax, that his birth hospital was not equipped to handle. Jakob remained at Children’s in the NICU for only a few days, but would return to the hospital for cleft lip and palate repair surgery three times before his first birthday. His longest surgical procedure was the one-stage repair of his lip, nose and gums which lasted 11 hours. Jakob also has had some trouble with his ears and went through two sets of tubes to get his chronic ear infections under control. He has only a very mild speech delay today and will return to Children’s for one more surgical procedure when he is a little older. A piece of bone from his hip will be used to reinforce the repair of his upper jaw. Jakob loves playgrounds and trains.
Jakob's parents talk about health care reform at Family Advocacy Day.
Caroline is a beautiful and spirited 22-month-old girl who was born with a unilateral complete cleft lip and palate. Her older brother Jakob and father were also born with cleft lip and palate, so the family is taking part in a genetic study through Children’s Hospital Boston to determine whether or not a genetic syndrome runs in their family. Caroline underwent four surgeries to repair the cleft lip and palate at Children’s during her first year of life and also had ear tubes placed in her ears. At each step along the way, things could not have gone more smoothly for Caroline. Today, she continues to do extremely well, with no speech or eating problems. Caroline is very fond of her dolls and pretty quick on her feet, probably from always trying to keep up with her older brother.
Caroline's parents talk about health care reform at Family Advocacy Day.
Louise is a happy, energetic 7-year-old girl. She loves her younger brother Sam and her parents. When she is not jumping rope or playing with her dog. Louise likes to teach her first grade class and even the school principal about epilepsy seizures, brain surgery and how the brain works. Thanks to Children’s Hospitals and Clinics of Minnesota, Louise has been seizure free since her brain surgery in 2007.
Louise and her family talk about health care reform at Family Advocacy Day.
Kelsie woke up last March with a serious headache and suffered an arteriovenous malformation rupture (AVM). Emerging from a coma a month later, she began inpatient rehabilitation for her brain injury. In rehab, she made significant improvements but Kelsie’s mother began to worry about how she would continue making progress when her private insurance would allow only 60 therapy visits for rehabilitation in a year. With the help of a case manager, Kelsie was able to obtain a one-year Medicaid waiver due to the severity of her new disabilities. Upon release from inpatient care, Kelsie began receiving physical, occupational and speech therapy at Children’s Hospital of Richmond. Kelsie’s mother and doctors are amazed at her progress; many children don’t survive this type of injury to the brain. Kelsie is still working on her pronunciation, processing, short-term memory and improving her limited motor skills. She recently started using her passion for music and a musical keyboard in therapy sessions to help her reach her full potential.
Cody is a wonderful, fun-loving, young man who enjoys after-school activities, riding his skateboard and hanging out with his family and friends. At 1 week old, Cody was diagnosed with the life threatening disease cystic fibrosis. Cody takes more than thirty pills every day to keep his body healthy. In addition to pills, he takes two nebulizer treatments and receives 30 minutes of daily chest physical therapy. Cody and his family work throughout the year with his physicians at Children’s Hospital Boston to keep him as healthy as possible. Cody may have a disease that’s considered incurable but he does not let it get in the way of being a teenager. He lives life to the fullest and welcomes every new day as any other teenager does.
When Cole was 10 days old his parents began to hear him wheeze. After a visit to his doctor he was immediately sent to All Children’s Hospital emergency room. His condition deteriorated rapidly from there, and he was swarmed upon by an army of doctors and nurses. Cole had contracted a severe case of respiratory syncytial virus (RSV), and he was having difficulty breathing on his own. He spent a week in the ICU unit being monitored around the clock. After that he was moved to a regular floor of the hospital for an additional week until he was breathing well enough to go home. As is common with children who contract RSV he experienced recurrent episodes of wheezing and difficulty which means that he was also diagnosed with asthma. His parents feel that with this early diagnosis he has been an extremely healthy and active baby.
Alexandra is an inspiration to everyone in her family and a true role model of positivity in the face of adversity. As a baby and toddler Alexandra experienced multiple respiratory infections, bronchiolitis and pneumonia. Eventually diagnosed with asthma, Alexandra was put on a medication regiment that began to improve her breathing problems. She was referred to an ear, nose and throat specialist at All Children’s Hospital who discovered she had sinus cavities that were blocked by an abnormal bone growth. She underwent a series of surgeries to remove the growth, as well as, sinus polyps and adenoids. The results were dramatic and she became a different child. She was no longer cranky from not being able to sleep, she was able to get over colds without having severe asthma flare-ups, and in short she began to enjoy life. In order to support other children with asthma, Alexandra started her own fundraising initiative called “Tri 4 Asthma” where she gets people to sponsor her for every mile she completes in children’s triathlons.
Zoe is a spunky little girl who doesn’t give up. For most of her life Zoe has been battling a severe case of asthma. Over the years Zoe has become very familiar with All Children’s Hospital. She had surgery to remove her adenoids, two sinus surgeries, hernia repair surgery (a result of chronic coughing), multiple bronchoscopes and many sinus cultures. She has also had many hospital stays so that she can receive oxygen in order to prevent her blood oxygen level from falling dangerously low causing brain damage or respiratory failure. She understands that staying in the hospital is just part of her life. She is what the doctors think of as a “medical mystery,” despite all the best treatment her asthma continues to be a challenge. There are no easy answers for Zoe’s condition but she keeps fighting, and All Children’s Hospital doctors and nurses are by her side all the way.
Thirteen-year-old Brian likes to talk on the phone, go to the movies and ride his bike. He has a twin brother and an older sister, Monique. Like his sister, Brian was diagnosed with sickle-cell disease at birth. While he says dealing with his sickness causes him to miss out on a lot of activities, he is very thankful for the care he has received from Miami Children’s Hospital.
Monique was diagnosed with sickle-cell disease at birth. She was born in London and moved with her family to the U.S. when she was 4 years old. While she says her life has been hard due to her illness, she credits Miami Children’s Hospital for making things a lot easier. Monique enjoys hanging out with her friends, modeling and listening to music.
Sebastien is an energetic 3 year old who was born with a complete bilateral cleft lip and palate. Sebastien’s parents learned that he would have a cleft lip and palate when his mom was 18 weeks pregnant. Due to the severity of his cleft, he was sent to Children’s Hospital Boston to have it repaired. Throughout the three surgeries that he has undergone, Sebastien has never stopped being his adorable self. Sebastien loves to drive his John Deere Gator around outside his house while chasing his two dogs. He also loves to play with his cars and trucks. One of his favorite pastimes is playing racing games on the Wii.
Leo loved the outdoors, bird watching, camping, fishing and hunting. He was a wonderful son, caring big brother and steadfast friend. Diagnosed with acute myelogenous leukemia (AML) in March 2004 at age 11, he spent two years fighting his disease. He successfully achieved remission after chemotherapy but relapsed after four months. Additional chemotherapy and a bone marrow transplant did not achieve another remission but did enable him to live another awesome year, where he was able to spend time at home and in the outdoors doing the things he loved. Over those two years, he was inpatient at Cincinnati Children’s Hospital Medical Center for over 220 days. His brother and sister enjoyed visiting him at the hospital and cherished the time with Leo when he was at home between treatments. Leo died at home under the care of StarShine Pediatric Hospice on March 13, 2006. We love him and always remember his courage, strength, humor, grace and hope in all circumstances.
In many ways, 10-year-old Nick is like any other young boy. But Nick is also wise beyond his years. That’s because he’s had to make a very tough decision — not once, but twice. Nick was born with popliteal pterygium syndrome, an extremely rare condition that prevented him from walking the way most kids do. Though surgeries helped, Nick still had pain and relied on a wheelchair much of the time. He made a difficult decision last year to have doctors amputate his deformed right leg. Although the amputation improved Nick’s mobility, his remaining leg worsened, causing him significant pain. On his physician’s recommendation, Nick decided to have his left leg replaced with a prosthesis. Despite his challenges, Nick maintains a positive outlook and a contagious sense of humor. He once told his mom Greta that his biggest challenge “is probably getting motivated to finish my math homework.”
Abbigail is a happy and energetic 4-year-old who enjoys reading books, singing, coloring, painting and dressing up her dog. Her favorite thing to do is to go outside and play. She is an incredibly cheerful little girl who has brought so much joy to her family’s life and everyone who meets her. Abbigail and her parents have been a part of the Monroe Carell Jr. Children’s Hospital at Vanderbilt family since her birth in 2005. She was born 10 weeks premature and spent nearly three months in the neonatal intensive care unit. She was born with a small hole in her heart. Cardiologists watched it carefully until it closed on its own by the time she turned 2 years old. Abbigail sees an endocrinologist four times a year to treat and monitor her hypothyroidism, and comes to the hospital’s Down Syndrome Clinic for annual evaluations. Follow Abbigail as she prepares for her trip to DC on her hospital's blog.
Bobbi is an active 11-year-old. She lists her favorite activities as cheerleading, gymnastics, singing, dancing and playing the guitar. She also loves bike riding, playing basketball and long walks in the park. However, her ability to participate in any of these activities depends on whether or not she is having a pain crisis. Bobbi has sickle-cell disease and significant pain is a side effect she must deal with at times. With the support of her family and friends, the medical expertise of her physicians, and her positive attitude, Bobbi lives a full and active life. Bobbi is representing Children's National Medical Center at Family Advocacy Day.
Children's hospital patients and their families are traveling from across the U.S. for the N.A.C.H. Family Advocacy Day, June 17-18, 2009. They will tell Congress about the importance of children's health care coverage and health issues.
This site will feature a different participating child each week until the event.
Leave a comment and cheer on our champions for children's health!
Disclaimer: The views and opinions expressed in individual posts are strictly those of the author(s) and in no way represent those of N.A.C.H. N.A.C.H. assumes no liability for the information therein and extends no implied or expressed warranty or guarantee of accuracy. The receipt of unsolicited ideas by N.A.C.H. does not obligate N.A.C.H. to keep these ideas confidential, nor does it obligate N.A.C.H. to pay the person who submits them.
