2009 Families

In 2009, six families from five states across New England traveled to D.C. to participate in Family Advocacy Day and advocate on behalf of Children’s Hospital Boston.

Click here to read the blog archive from our 2009 families.


Isabella's StorySix-year old Isabella (“Bella”) of  Vermont was diagnosed with Down syndrome at birth. She has been seen at Children’s Hospital Boston since she was just 2.5 months old. She has experienced 11 surgeries, including heart surgery at 2½ months of age. According to her family, she is the “essence of our good fortune.” Described as brave, feisty, funny and sweet, Bella loves school and has many friends. She loves to read, ride horses, paint, swim, sing, dance and explore nature.


JakobJakob 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 and was rushed to Boston just after his birth in New Hampshire because of an emergency breathing problem. 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!


CarolineJakob’s younger sister, Caroline, is a beautiful and spirited 22-month-old girl who was born with a unilateral complete cleft lip and palate. Their father was also born with cleft lip and palate so the family is taking part in a genetic study at Children’s 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!


GregGreg is an extremely social, engaging 19-year-old from Maine, 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.


CodyCody is a wonderful, fun-loving 14-year-old from Massachusetts who enjoys after school activities, riding his skateboard and hanging out with his family and friends. At one week old, Cody was diagnosed with the life threatening disease cystic fibrosis. Cody takes more than 30 pills every day to keep his body healthy. In addition to pills, he takes two nebulizer treatments and gets 30 minutes of 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.


sebastienSebastien is an energetic three-year-old from Maine who was born with a complete bilateral cleft lip and palate. His parents learned of this diagnosis 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 he has had, Sebastien has never stopped being his adorable self. Sebastien has never had a problem eating or hearing and his speech has developed nicely with very little intervention. He has perservered through other illnesses as well, including asthma. 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.


rebekahRebekah is a sweet four-year-old from Rhode Island 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. 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.

3 Responses

  1. Thank you to all of the families who are sharing their stories in D.C. You and your families are what make my job as a physician at Children’s Hospital Boston so enjoyable.

  2. It is so important for our legislators to see the good people who are helped by Children’s Hospital Boston and the other children’s hospitals around the country. Then, they will understand why they can’t cut the aid. Thanks for taking the time to talk to our legislators!

    I’m a volunteer at Children’s and I see caring employees and inspiring stories each time I come in.

  3. These stories are inspiring. We appreciate your willingness to advocate for all children who need additional medical support. Our elected officials need to prioritize children’s health in their health reform efforts. This is money well spent.

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