My Child Gives Me Strength

Parenting with a rare disease of one’s own - Maude

The diagnosis was made very early in Jasmin’s life. He was hospitalized for analyses and testing when he was two weeks old. Nearly three weeks later, we were told he had SMA. I knew nothing about SMA disease before Jasmin was diagnosed. Nor had anyone in my circle ever heard about it. No one could guide us through what fate held in store for us.

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“When the doctor gave us the diagnosis and explained the irreversible effects of the condition, I did not need to accept that my son had SMA. Instead, I had to adapt to this new reality. I knew that tough challenges lay ahead of us, but I was ready to face them and to raise a child with unique needs.”

Jasmin’s condition would not be the last test awaiting us in our role as parents. When Jasmin was diagnosed with SMA, I, too, received my own diagnosis: dermatomyositis. Oddly enough, this condition is also rare.

In the space of a few weeks, my life was an emotional roller coaster. I ran the whole gamut of emotions as my body and soul experienced the joy of having a child, the stresses of post-partum and the depression that follows, and the blow of my son’s diagnosis, followed by the shock of my own diagnosis.

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“At one point, I no longer knew what to do, but I knew I had to stand tall and here I am still standing tall, still fighting for my son.”

My condition is a chronic illness that affects the skin and some muscles, including those in the arms and legs. I experience pain to the point that I am sometimes unable to take part in the more cumbersome exercises that are part of my son’s physical rehabilitation. The routine changes often when raising a child with unique needs and who is growing quickly and the effort to keep up is ongoing. Consequently, one has to constantly adapt.

Despite my own medical condition, my child always comes first. I must confess that it is difficult to look after myself and I fear for what the future holds for me. However, my kids are my source of inspiration and they are what motivate me to get up every day, ready to face the world one day at a time.