Stories about: Family Advisory Council

Giving thanks: Stories of volunteerism, gratitude and giving back

Thanksgiving Day is a time rich in family, gratitude and appreciation. In honor of the holiday, we are celebrating the patient families who have traveled through our doors and the selfless acts of kindness and volunteerism that follow.

Donating platelets and cycling for a cause

Ten years ago, Adam Nussenbaum’s son, Max, was treated at Boston Children’s and overcame a life threatening illness. Today, Adam gives his time — and platelets — to help those in need, and he is doing so in celebration of Max; his daughter Kate, who donated her bone marrow to help her brother; and the clinicians, who made his son’s recovery possible.

Shari Abramowitz, Max, Kate and Adam Nussenbaum
Shari Abramowitz, Adam, Kate, and Max Nussenbaum

For the past eight years, Adam has participated in the Pan Mass Challenge and raised over $55,000 to benefit the Pediatric Bone Marrow Transplant Center at Boston Children’s. He also donates platelets on a monthly basis.

“It has been immensely gratifying to know that I have and will continue to play a small role in helping patients like Max on their road to recovery,” he says.


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Devastation and devotion: A father faces his daughter’s difficult diagnosis

pulmonary hypertension bill shannon o'donnell

Fifteen years ago, days before her graduation from kindergarten, Shannon O’Donnell played in the hallway of Boston Children’s Hospital while cardiologist Dr. John K. Triedman broke the news to her parents Bill and Laura O’Donnell. Shannon’s recent fainting spells were not due to asthma or a vasovagal response. Shannon — their happy-go-lucky, active 6-year-old — had idiopathic pulmonary hypertension, abnormally high blood pressure in the arteries of her lungs.

Untreated, pulmonary hypertension causes the heart muscle to weaken and eventually fail completely. There was — and still is — no known cause and no known cure.

Bill and Laura were shocked. Before arriving at Boston Children’s, the O’Donnells had been told that the fainting episodes were not a big concern and could even be Shannon looking for attention. “It took Dr. Triedman three or four times to tell us before it sunk in,” remembers Bill. “He finally had to look us straight in the eye and tell us that our daughter could die from this disease. We were devastated.”

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Carson Domey for president!

Carson Domey OFG Crohns

Most 11-year-old boys don’t own multiple dress suits, nor have they testified at a State Capitol. But Carson Domey is far from typical. As his Twitter handle suggests (@POTUSIT), he’s in training to be President.

This year has been a particularly productive one for Carson, as he takes cues for his 2044 presidential campaign. Five years ago, though, Carson was thinking more about getting a diagnosis than practicing politics.

Starting around age 6, Carson’s cheeks and gums would mysteriously become puffy and red. “It would come and go, and was something that only a mom would pick up on,” remembers Carson’s mother, Michelle. She took him to a dentist and an otolaryngologist, but the symptoms were always gone by appointment time, so neither doctor was concerned.

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Two perfect reasons to pay it forward

GetMediaPreview-2In 2008, Katie and Paul Litterer were living in New York City and expecting identical twins. When Katie was 26 weeks pregnant, they bought a house near Boston to be closer to family. The following week, Katie went into early labor, resulting in an emergency C-section and the premature birth of their daughters. Their new house would remain empty for months.

Sophie arrived first at a tiny 1 pound, 15 ounces and let out a cry. Maddie followed her sister at an even tinier 1 pound, 10 ounces. “I didn’t hear anything,” Katie remembers. “They just ran out of the room with her.”

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