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 behavioralsleep 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:
Ali, on the day of his Phi Theta Kappa induction
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.
Need More Help Getting Your Kid to Fall Asleep (and Stay Asleep)?
Get your copy of my new book, It's Never Too Late To Sleep Train. It’s easy to read (even if you’re exhausted) and it puts my best sleep training advice right at your fingertips when you need it.
I care about your privacy
This site uses cookies and related technologies, as described in our privacy policy, for purposes that may include site operation, analytics, enhanced user experience, or advertising. You may choose to consent to our use of these technologies, or manage your own preferences.
This website uses cookies to improve your experience while you navigate through the website. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are as essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may have an effect on your browsing experience.
Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.
Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.
Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
Cookie
Duration
Description
__cf_bm
30 minutes
This cookie is set by CloudFare. The cookie is used to support Cloudfare Bot Management.
_ck_form
1 year
This cookie is set by the provider ConvertKit. This cookie is used for displaying and managing the email subscription forms on the website.
ugid
1 year
This cookie is set by the provider Unsplash. This cookie is used for enabling the video content on the website.
Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.
Cookie
Duration
Description
_gat
1 minute
This cookies is installed by Google Universal Analytics to throttle the request rate to limit the colllection of data on high traffic sites.
YSC
session
This cookies is set by Youtube and is used to track the views of embedded videos.
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
Cookie
Duration
Description
_ga
2 years
This cookie is installed by Google Analytics. The cookie is used to calculate visitor, session, campaign data and keep track of site usage for the site's analytics report. The cookies store information anonymously and assign a randomly generated number to identify unique visitors.
_gid
1 day
This cookie is installed by Google Analytics. The cookie is used to store information of how visitors use a website and helps in creating an analytics report of how the website is doing. The data collected including the number visitors, the source where they have come from, and the pages visted in an anonymous form.
visitor_id
1 year
This cookie include cookie name plus the unique identifier of the visitor account. The value stored is the unique ID of the visitor which is used for tracking the visitor.
vuid
2 years
This domain of this cookie is owned by Vimeo. This cookie is used by vimeo to collect tracking information. It sets a unique ID to embed videos to the website.
Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
Cookie
Duration
Description
IDE
1 year 24 days
Used by Google DoubleClick and stores information about how the user uses the website and any other advertisement before visiting the website. This is used to present users with ads that are relevant to them according to the user profile.
test_cookie
15 minutes
This cookie is set by doubleclick.net. The purpose of the cookie is to determine if the user's browser supports cookies.
VISITOR_INFO1_LIVE
5 months 27 days
This cookie is set by Youtube. Used to track the information of the embedded YouTube videos on a website.