Stories about: Our Patients’ Stories

Lauren’s story: How roller derby saved my life

Lauren, who was born with ALCAPA, holds a sign about what roller derby is teaching her.I wasn’t a particularly athletic child. The second day of soccer practice, in sixth grade, we had to run laps around the soccer field, and 10-year-old me said, “I feel like I’m going to have a heart attack!” My coach disagreed. I quit. That much running was not for me.

Fifteen years later, at age 25, I had not only joined a roller derby league, but had also worked my way up to doing contact drills at practice in just three months. I felt incredible! I felt powerful! I felt unstoppable… until I went into cardiac arrest at a Thursday night practice this past July.

Read Full Story | Leave a Comment

Daughter’s neurosurgery inspires mom to give back

Kannon, who had hydrocephalus, is now a happy 5-year-old.Danielle Parkman isn’t a doctor or nurse. In fact, she’s not a clinician of any kind. And yet every day she makes the lives of patients in the Boston Children’s Hospital Division of Pulmonary and Respiratory Diseases a little bit easier.

As the Senior Administrative Associate for Pharmaceutical Benefits and Prior Authorization Specialist, Danielle is responsible for getting approvals for pharmacy benefits and prior authorizations for all pulmonology patients. It’s a daunting task, but she doesn’t take no for an answer.

“I love my job, and I love fighting for my patients,” says Danielle. “I know I’m making a difference. I can also empathize with many of the parents because I’ve been in their shoes.”

Read Full Story | Leave a Comment

Whatever it takes: Fighting for Michael

Michael doesn't let short bowel syndrome keep him from enjoying sports

Michael stood at the top of the hill, staring down at the glittering white snow. The prospect of skiing to the bottom was scary — on previous trips, he’d refused to try, worried that he would fall. But this time was different. He was ready to take a chance. Attempting to balance without using poles, he pushed himself forward and glided through the powder as his family cheered him on. By the end of the day, the 8-year-old had sailed down the slopes five times, all by himself.

The accomplishment was even more meaningful for his parents, Bill and Lisa Smith, who have watched him fight to survive — and thrive — since he was an infant. “He had some issues with spitting up and turning blue and was diagnosed with acid reflux when he was about a month old,” says Bill. “But we had suspicions that something else was wrong.”

Read Full Story | Leave a Comment

Prepared for the unexpected: How Henri beat C. diff

Henri after being treated for C. diff
Henri and his sister, Lucienne

From the time he was born, Henri has been very reactive — to everything.

As a baby, he was allergic to milk and soy, which led to weeping eczema all over his body. His allergies meant frequent ear infections and sinus infections.

As a toddler, he was anemic and underweight. He had two urinary tract infections (UTIs) with fevers.

At age 3, he had a circumcision because of the repeated UTIs.

At age 4, a sinus infection spread to his eye orbit. Every sunscreen on the market gave him (and still gives him) a rash.

At age 5, a bug bite on his ear led to a cartilage infection that required antibiotics.

Suffice it to say, I am always prepared for the unexpected with Henri.

Read Full Story | Leave a Comment