My Child With a Rare Condition Taught Me About Never Giving Up on My Dreams


As a parent, I try to inspire my children to follow their dreams. I tell them to work hard and not to fear rejection. “You can be anything you want with hard work and determination,” I say. But I failed to practice what I preach lately, and my son who lives with many more challenges than I do reminded me of that fact.

My 9-year-old son has a very rare condition called Schwartz-Jampel syndrome (SJS). You wouldn’t know that Giovanni has had nine surgeries with a 10th surgery looming. He seems to me like the happiest little boy with the sunniest personality. My son has many goals set for his life, and his determination to meet them is inspiring to me.

For Rare Disease Day, Giovanni made multiple videos about him and his life with SJS. In one video, he made signs about his likes and dislikes. He shared how he is much more than the condition he was diagnosed with at the age of 2. He declared, “I am Giovanni, not SJS,” at the end of the video. I must admit I was a proud mommy in this moment. This amazing young man my husband and I have raised, came up with this awareness idea all on his own. Giovanni told the world what he wanted them to see, and we hope he will continue to raise awareness.

After this video he asked me why I had given up on my dream of writing. That question caught me off-guard. I thought, “Whoa, he’s more observant than I thought.” I tried to explain I had a couple of pieces turned down so I was taking a break. Giovanni pondered that answer for a moment, and I noticed he was really thinking about it. Then he looked up to me with those blue eyes and said, “If I fail a test in veterinarian school I can’t take a break. The animals need people like me to care for them and you need to keep writing Mommy. You like it so much. And you never know, maybe someone needs to hear your words. You could really help someone, too.”

Wow. Here is this amazing little boy who has fought bigger and tougher battles than I could imagine telling me not to give up on my dreams. Giovanni was worried that I was giving up and he wouldn’t have it. And he was right, I needed to get back to doing what I loved.

My son taught me a lesson and I am more proud than ever. Giovanni seems to be incredibly wise beyond his years and I guess he would have to be; he has been through more than I could ever imagine.

Thank you Giovanni for being you. You only want the best for everyone. You are loving and kind and you are going to be the best veterinarian with that amazing heart of yours!

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