An Invitation from Jack's Dad

When our happy and seemingly healthy 6-month-old baby was diagnosed with an incurable rare disease called Spinal Muscular Atrophy (SMA), we were shocked. For two weeks following baby Jack’s diagnosis, doctors and nurses taught us about feeding tubes, wheelchairs, ventilators, suction machines, CPR for infants, DNR (do not resuscitate) orders, and many other things no parent should ever have to learn.

Baby Jack was given a year to live. This was the reality of SMA. Our family was devastated.

I didn’t know what to do. It didn’t seem like I could do much to help baby Jack, so I turned my attention toward helping CureSMA, the organization that supports families like mine.

I’ll always remember the first conversation I had with the Executive Director of the organization, who was also the parent of a child with SMA.

“Audrey, I’d like to do anything I can to help you and the organization, what do you need?”

I’ll always remember Audrey’s reply.

“Someone told me we should have a website. Do you know what a website is?”

The year was 1995.

Four months later, I attended my first CureSMA conference and presented the organization with their new, five-page website.

Three years later, I reminded myself that I was trained as a psychologist, not a web designer, so I offered to help CureSMA in other ways.

And Jack didn’t seem to be cooperating with the doctor’s prognosis for him. He kept on living.

Over the past twenty years, I’ve facilitated dozens of workshops and groups in support of our SMA-affected families and presented at many conferences on the experience of parenting a child affected by a rare disease. I’ve trained and consulted with professionals who provide health care services, and more recently, pharmaceutical company staff and executives who provide newly approved treatments to our SMA-affected family members.

Occasionally, my son, Jack, would pitch in to help by accompanying me to a meeting or conference. His presence always made my work better. Everyone whose paths we crossed encouraged us and cheered Jack on.

Fast forward to 2019. I had the good fortune to meet the team at Novartis Gene Therapies at our CureSMA conference in Anaheim, CA. A few months later, at another event, members of the team attended one of my presentations in Boston.

“I think we have a job for Jack,” I was told.

A job for Jack? How wonderful it was to hear that. For twenty years, all the jobs had been for Dr. Al — because of Jack — but not for Jack himself. Novartis Gene Therapies had sponsored a video game specifically for children affected by SMA. Gene therapy for SMA? We’ve certainly come a long way since that first website.

I helped Jack to meet by Zoom with the good folks at Numinous Games. They took the time to get to know Jack. They asked him lots of questions about his life, his interests, and especially the unusual Eyegaze technology he used to access his computer. Jack was thrilled to have the attention of a team so genuinely interested in how he accessed his computer. Ryan, Mike and Amy took the time to connect with the developers of Eyegaze technology so they could design the game to work with any level of access needs for our SMA community. They even spent time helping Jack with some of the challenges he faced with other video games.

Ryan, Amy, and Mike became Jack’s friends. They cared. And they knew how to help.

The Numinous team met with Jack weekly. They watched him use his computer to play games, and asked Jack to show them games he could not play so they could learn about the common obstacles Jack encountered and the reasons for them. Everything they did to help him engage with the video games he loved would translate into a better gaming experience for other kids like Jack, in the game they were designing specifically for kids with SMA.

Ryan and Amy trusted Jack to write blog posts about his experiences playing video games.

Then the Numinous team trusted Jack to try out their new video game, Painted Waters. Jack was eager to help even though he understood that Painted Waters was being designed for younger children with SMA.

I remember my early efforts to find a way to help. I never imagined that one day my grown son would be the one wanting to help. I was his assistant, but Jack was the Freedman with the job this time around. That felt great to both of us.

Over a period of months, our Tuesday evening meetings became part of the rhythm of Jack’s weekly schedule. Ryan and Amy introduced their four children to Jack and me, and we learned about their 5th child, Joel, who passed away because of a different medical condition – cancer- a few years ago.

Ryan and Amy understood Jack because of Joel. Mike and others on the Numinous team did, too.

We all understood how precious life was and the inherent value of the members of the SMA community we were hoping to serve in a new way . Those Tuesday night Zoom sessions together were truly beautiful.

And a video game was being built, piece by piece. Jack learned about video game design from the designers. He loved testing out the newest versions of the game each week. Jack and I both enjoyed the colors, the sounds, the characters, and the surprises that came each week with every new version he play-tested.

Sometimes the game worked smoothly and sometimes it had bugs Jack needed to help the team discover. But Jack loved it either way. He was engaged, he was valued, and he was part of a team working to help other kids who face the same challenges. That Jack was playing this creative, fun, colorful, action-packed game using only his left eye was remarkable.

Jack passed away on Tuesday, October 5th, a day Jack was scheduled to meet with Ryan, Amy, and the rest of the Numinous Games team. He was 26 years old.

On one hand, Jack’s passing came as a complete surprise: an acute medical event that unfolded abruptly and without warning.

On the other hand, we were told to expect to lose Jack within the year when he was diagnosed with SMA on November 7, 1995. We had 25 years with Jack that no one expected we would have.

Over Thanksgiving week, I reflected on the 26 years we had together with Jack, and I am feeling profoundly thankful, as I look back with no regrets.

Just as I had felt called to help the SMA community the first year of Jack’s life, Jack himself was called to help the SMA community for the last year of his life. Jack worked hard, he was a valued member of an enthusiastic team. He took great pride in his efforts, and felt very committed to making the game the best it could possibly be so that younger children with SMA could have some fun.

As we approach the first early release of Painted Waters, I know Jack would be very proud of his contribution, and I also know that so many other children I have come to know in our SMA community will be thrilled to have the opportunity to play together. If you’re reading this and you are a young adult with SMA or the parent of a child with SMA, I hope you will consider carrying on Jack’s work by joining the Numinous team as they strive to make Painted Waters the very best game it can be.

Painted Waters will be a gift to our SMA community, just as the opportunity to help design the game was truly a gift for my son. As we approach the holidays and a New Year, I am truly grateful for these very special gifts, and for the wonderful 26 years with my son, Jack.

Thank you, Ryan, Amy, Mike, and your entire Numinous Games team for helping to make the last year of Jack’s life so meaningful and special for him. I will always be grateful.