The Advice I Received That Made Our Family’s Rare Disease Journey Less Isolating


When my son was born, we were so proud and posted photos on social media to share our joy with the world. During his first week of life, we shared only a few photos of our family holding him and everyone smiling ear to ear. Then something terrible happened. He became seriously ill.  

Over the course of the first month of his life, he was transferred from one hospital to another, finally ending up in a major city under the care of world-renowned doctors in a children’s hospital. We were paralyzed with the shock of all that was going on with our child and far away from the ones we loved.

During the next four months, our hospitalized son was subjected to countless consultations from various departments within the hospital and what seemed like endless testing for various genetic conditions. Some of these tests took months to obtain results and were only administered in special labs in various institutions around the country and, eventually, around the world.

Struggling to manage the daily tasks of being a mom and a wife in this type of situation was exhausting. I became withdrawn from family and friends and was overcome with an unfathomable concern for my sick child, the welfare of my healthy child and the lack of any “normal” relationship with my husband while we were in this crisis.

After months of not receiving any definitive diagnosis from the numerous tests that were performed, our son’s health was failing. We were all overcome with the fear of impending doom like a cloud floating over all of us. My husband and I were obviously depressed, my daughter was doing poorly both socially and academically and if something or someone could have shaken us to snap us out of it, we would have been very grateful.

Don’t get me wrong, we were incredibly thankful for the kindness we were shown with the phone calls, cards and prayer circles that were all going around for my son and our entire family. However, being hours away from family and friends and in strange city and sitting over our infant child whose health was failing was, quite frankly, depressing.

But someone did come along. She offered the smallest piece of advice. The advice was not to hide in our grief and to share what we were going through, even if we had to edit the details because we had a community of people who truly cared, even if they were miles away.

I admit I had to ponder the advice a lot because, to say this quite frankly, if you see something that’s unsettling in life, your natural instinct is to turn away. My son’s situation was dire. He was an infant that no one, other than his nurses, doctors and our immediate family, had gotten to know. I wondered how I could express my joy of being a mother with the ultimate sadness of his failing health in a way that our family and friends could digest.

I literally was concerned, like a mama bear, about how everyone would perceive our situation. How silly, right? But my maternal instincts had kicked into high gear, and I was in protective mode.

I ended up biting the bullet, though, and facing my fears by letting our family and friends know what was going on with our son on social media. The support we received was absolutely the most comforting thing we had felt in months. I would post what was going on when I had the time. It felt like a weight was lifted off my shoulders when I put it out there for others to help carry.

We would read the replies and share them with our daughter with smiles on our faces. We were able to find joy in the sentiments that were being thoughtfully written to us. Our family was able to express our joy in the small milestones our son was able to achieve while in the hospital.

When it came time to decide on a bone marrow transplant to save our child’s life, we were able to share this with our family and friends. Yet again, the support we received was tremendous.

I have to thank my stepmother for offering a small piece of advice because it truly did help our family get through some difficult times by sharing our experiences with our family and friends. We’re also very thankful to all of our family and friends for sharing our experiences and helping us through the difficult times.

This was more than five years ago. Social media has evolved significantly with closed groups, support organizations and many more people sharing their experiences and receiving the same hope we received from families and friends.  

I’m grateful for social media because this journey with a rare disease is no longer isolating.

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Lead photo by Thinkstock Images


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