Jack is now 26 years old – he uses a wheelchair for mobility, a feeding tube for nutrition, and a ventilator to breathe, but he is very much alive. I feel very fortunate for every single day with my son.
For 25 years, I have been deeply involved with CureSMA, our national support and advocacy organisation for SMA families in the USA. I have both received support and provided support to many of our families over the years. As a practicing psychologist, I have offered dozens of workshops to our SMA-affected families over the years. The most meaningful professional experience I have each year is to co-facilitate our “Kids Talk it Out” groups for our SMA-affected children.
Our children are extraordinarily articulate, wise, and motivated – and it is very humbling to be the only person in the room who doesn’t use a wheelchair.
Q. Can you tell me a bit about your son and how his diagnosis journey changed your life and his?
As a parent, I will never forget the day of my son’s SMA diagnosis. That day - November 7, 1995 - will forever be burned into my soul. It felt as though life as I once knew it ended the moment the doctor told us that Jack was affected by an incurable and (at the time) untreatable neuromuscular disease. The life I lived before that day is not the same life as the life I have lived after that day.
Thankfully, despite all the medical challenges he has faced, Jack is a very happy, motivated, and friendly young man. He has two part-time jobs, three thousand Facebook friends, a loving family, and a purpose.
Twenty-six years later, I’m still doing my best to be a good Dad. Over 26 years, we’ve had 300 nights in the intensive care unit, dozens of home care nurses, and challenges related to special education, medical equipment, and the health care system. But given where we began with Jack’s prognosis, I feel very fortunate for every challenge we face.
Q. What inspired you to go into your line of work as a psychologist for rare disease families/patients?
I feel an obligation to support other families affected by rare disease, as it is very difficult to find professionals who can truly relate to the unique and complicated challenges our families face.
I was completing my Ph.D. in counseling psychology when Jack was diagnosed with SMA, so I was already headed towards a career as a psychologist. Over the years, as I adapted to life as the parent of a child with a rare disease, my practice evolved to include more and more families affected by rare diseases and complex medical issues. I feel an obligation to support other families affected by rare disease, as it is very difficult to find professionals who can truly relate to the unique and complicated challenges our families face. In addition to supporting families directly, I also consult with rare disease advocacy organisations, pharmaceutical companies, and health care organisations in a variety of capacities. My son, Jack, has led me to this work and has inspired me to use my skills and experience to help as many other families as I can.
Q. Are there any overarching common challenges you see families facing in the rare disease community and do you have any advice or insights to tackle these challenges?
Families in the rare disease community face a multitude of challenges each day. First, because our situations are indeed rare, the majority of people we encounter can’t relate to our experience. Second, we are faced with the challenge of navigating complex health care systems that may not have the resources to meet our unusual needs. Third, we understandably worry about our futures and the futures of our children.
Be proactive in educating your friends, families, and communities about your rare disease. Others do want to help, but often need our direction on how they can best help. Second, seek support from other families through your rare disease advocacy organisations. There is indeed strength in numbers. Our best resources are often other families who have blazed a path before us. Finally, and perhaps most importantly, we all need to do our best to stay in the present and enjoy each and every day with our families and friends.
Q. Do you have any advice for other Dads or families who may be going through or gone through what you have?
Yes. Twenty-six years ago, when we were told our baby would not live past the age of two, I could never have imagined how much Jack would accomplish in his life. Twenty-six years later, my son is still alive, motivated, productive, and happy. Twenty-six years later, there are three available treatments for Spinal Muscular Atrophy, and my son is benefiting from one of the new treatments.
We can never know what the future may hold. My advice: Take care of yourselves so you can take care of your child and family….keep hope alive….and never, ever give up.
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Rare Revolution Editor