Julie, caring for her son

My son, Van, was diagnosed with Spinal Muscle Atrophy (SMA) in 2008; a rare degenerative neuromuscular disease that affects 1 in 60,000 children worldwide. The doctor looked at my 8-month-old baby and said, “take him home and love him, there is no cure available for your son.” I felt my world turn on its axis and felt so frustrated at the doctor’s response. How could he not provide me with any guidance? The last thing a mother wants to hear from their child’s doctor is “there is nothing we can do for him and to love him.” Of course, I would love my son, I did not need the doctor to tell me to, but I would do much more than that.

Coming from a research background, I knew there had to be resources out there. I quickly found a support group of mothers with children diagnosed with SMA who shared their experiences, research and medical protocols. Caring for my son quickly became a full-time job. I made the decision to leave my career to do whatever was necessary for Van.

With SMA, the common cold could very regularly develop into double lung pneumonia. From ages 1 to 5, Van was admitted into the hospital several times a year to be treated for pneumonia and collapsed lungs. It was through the advice of the mothers in the support group that I found a machine that helped lower the risk of Van getting pneumonia. There has been a lot of emotional turmoil throughout my caregiving journey. I felt the most fearful when Van had a 9 hour innovative back surgery at 6 years of age to correct his scoliosis. Although I had calculated the risk, ensured that it was the best solution, and found the best doctor for the job, I couldn’t help but feel fear when it became time for the surgery. You roll your child in the operating room and you know he’s in the best hands, but anything could go wrong – you know he might not come out.

My strength and confidence as a caregiver has come from being well informed and well-read on his rare disease. I have suggested many new solutions and introduced the doctors to new procedures that may help in Van’s case. I am very grateful for the receptiveness of the doctors I have encountered throughout Van’s life. Also, I have been truly blessed to be surrounded by a strong support system including my family, and my friends – some of whom have shared similar experiences.

Caregiving has taught me perseverance, and how important it is to ask for help. I’ve also learned that unless you are ok, you can’t help anyone. Take a moment for yourself – you need it.

Skip to content