I care for children with a variety of illnesses. Some of these illnesses, like asthma and obstructive sleep apnea are common, and not usually life threatening. However, they still represent a blow to the parent and the child. Parents of an asthmatic child worry about staying out of the hospital, or if their child will be able to ever play soccer or compete in a track meet (although they can, and they may even get a medal). Parents of a child with behavioral sleep problems worry that they will not be able to fix their child’s issue, and that they will never have a good night of sleep again.
Parents deal with their child’s medical issues in an aspirational fashion. Their goal is that their boy or girl will be able to move past their issue — sometimes a cure, sometimes such good control that, say, their asthma doesn’t slow them down at all. A big part of my job is encouraging those aspirations. When a parent or child is having a hard time, I try to be at their elbow, whispering in their ear that it is going to be OK, and doing my best to make that so.
One of the great things about being a pediatrician is that most kids are going to do great without much help. And as I often tell families, I’m a glass half full kind of guy. It’s easy to be when you work with cute kids and charming teenagers all day long.
I don’t want to sugarcoat it, however. I deal with children and adults with life-limiting diseases such as cystic fibrosis and Duchenne muscular dystrophy in my practice. These are very serious disorders which impose a terrific burden on affected individuals and their families.
In this context, I want to tell you about my patient Ali. Ali died suddenly this summer from complications of his Duchenne muscular dystrophy (DMD). [Note that his family has given me permission in writing to share his story].
Ali was diagnosed with DMD at age three. Born in the USA, he moved to Pakistan to live with his father’s family from 8 months of age until age ten, when he returned to the US. I first met Ali in 2009 when he was 19 years old. He was recovering from a severe pneumonia, influenza, and respiratory failure, which resulted in a seven month-long hospitalization and rehabilitation to wean off daytime ventilation.which resulted in a seven month-long hospitalization and rehabilitation stay to wean off of daytime breathing support. He was a soft-spoken young man in a wheelchair attended by his mother and aunt. He was dependent on a breathing machine (bilevel positive airway pressure or BiPAP) at night to help him breathe, as well as a cough assist device and pulmonary VEST to help clear lung secretions.
Although at first he seemed shy, it was not long before I realized that Ali was a force to be reckoned with. Although he was dependent on his family for almost all of his daily activities, he graduated from high school in 2009. His mind was unfettered by his disease. He was a brilliant student. His mother wrote:
He was a student at Nashua Community College where he studied psychology; he had been recently inducted into the Phi Theta Kappa Honor Society. Politics, world affairs and current events kept Ali busy and up-to-date on an array of issues. Ali met two presidents and many other political candidates during his busy life and took his civic duty to vote very seriously. He cast his first ballot (absentee) at age 18 from Children’s Hospital Boston while a patient in the Intensive Care Unit.
Ali’s academic achievement would be impressive in anyone. But when you realize that he could not even pick up a pencil, this is really stunning. The thing about Ali was that he was hilarious. He had a biting wit and sense of satire, which would crack me up when I saw him. It was only after his death that I realized that he was actively putting up political videos on YouTube under the alias ScaryBears. (Warning: I am a liberal guy, but Ali makes me look like Barry Goldwater).
Ali never gave up hope. He worked hard to stay well. He could be stubborn but that was part of his charm. The last time I saw him, he asked me about the latest research on DMD. His hope may have been as simple as getting to school every day, or meeting via Skype with his dad in Pakistan in the afternoon. He never pitied himself. He led a life that was remarkable.
It is easy as a health care worker to be discouraged by the scale of the problems that your patients face. And a sudden death like that of Ali’s fills me with sadness. But I’m proud to have known Ali, and to have helped him in a small way as he made his way in the world.
I have a friend named Gordon who is in his 40s who also suffers from DMD. He also has a remarkable story, which I would like to share with you in a future post. I asked him about the nature of hope in chronic illness. This is what he wrote:
Hope is an important element in thriving with a chronic disease. The mundane details of a disease can easily overwhelm a person (or family) if you lose sight of your dreams. It isn’t just people with chronic diseases who need to nurture hope, everyone needs it. Life itself can be wearing at times, but hope gives you inspiration, goals and some control over your world. At least you know how you want your life story to play out.
An interesting feature of hope is that it helps you to learn about and cope with disappointment too. I’ve noticed over time how my hopes change. Sometimes they shrink down to very small changes or goals, other times they balloon out to encompass far more than I can really handle. As your goals ebb and flow, you learn to accept some limitations and rail against others.
Every day, I see kids being kids in my clinic. This is true if they have asthma, OSA, DMD, or are just visiting with their siblings. They don’t get lost in the alphabet soup of their diagnoses and this gives me hope for them, myself, and the future. I hope that you feel a bit inspired by Gordon and Ali as well.
I would like to offer a special thanks to Ali’s family for allowing me to share his story. His mother Liz provided many useful edits and much of the factual information.