How Friendships Changed After Our Daughter’s Diagnosis

Things change, there’s no denying that. But when you’re handed the unexpected news that your baby, who was born healthy, has a debilitating disease, change can be life-altering.

But change isn’t always bad. One of the first changes that came our way after our daughter Rylae-Ann’s diagnosis was new friendships.

Before there was any sign that something was wrong with Rylae-Ann, my wife and I were open and gregarious. We shared our travels online, posted to social media about our new family, and met with acquaintances. We took Rylae-Ann on tours of ancient towns and visited hair-raising glass bridges that overlooked gorges in China. By the time Rylae-Ann was 3 months old, she had already visited five countries.

Judy holds Rylae-Ann during a visit to a village in China. (Photo by Richard E. Poulin III)

Retreating into the shadows

Once we noticed something strange happening to our daughter, all of that came screeching to a halt. Rylae-Ann wasn’t reaching her milestones and couldn’t do the same activities as other children. When we tried to post photos of her, we had to prop her up and pose her.

Perhaps we were trying our best to deny what was happening. Maybe we wanted to pretend to other parents that our daughter could do the same activities as their kids. It was probably a combination of the two, and more.

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As the disease began to make itself more visible, however, we retreated into the shadows and closed off our life to others.

While friends and family members took their children to the zoo, play dates, and parties, we remained at home. If we did venture out, it was to hospital appointments or to admit our daughter to the intensive care unit. We got off social media and declined invitations. Our daughter became our sole focus, and getting digital thumbs-ups and likes on social media no longer mattered.

I still wanted to go out and meet friends and colleagues, join in the fun of outings, and show off Rylae-Ann, but what she could do, and what we felt comfortable doing, were limited. Our priorities began to change. We no longer shared the same interests or talked about the same things. It wasn’t anyone’s fault.

Rylae-Ann is unable to join many activities because of the severe symptoms of AADC. (Courtesy of Richard E. Poulin III)

Finding support

For a while, we had no friendships. There was only us – my wife, Rylae-Ann, and our battle to understand what was happening to our daughter. Once we discovered it was aromatic l-amino acid decarboxylase (AADC) deficiency, our focus became how to treat and offer as much care as we could to Rylae-Ann. We had no time for buddies, and even if we had time, we weren’t ready to share our story. We didn’t even speak to family much.

Over time, we began to adjust to this new life, an adjustment that brought many new companions. But instead of meeting people at the mall or at a restaurant, we met at hospitals and clinics. Our new friends were now other determined parents and exceptional children battling afflictions.

We no longer went to parties. Instead, we joined support groups and physical therapy centers. We met so many new and wonderful friends who could relate to our fight, share advice, provide support, and chat about the world within the rare disease community.

Rylae-Ann swims with her dad as part of a pool activity. (Courtesy of Richard E. Poulin III)

A new world awaits

Accepting these changes took time. Once we were able to embrace them, we established more significant connections and learned about so many harrowing tales and courageous battles against an alphabet soup of rare diseases that I had never heard of before, which helped us overcome so many of our own obstacles.

I loved my former life and the friends who were a part of it, but I have moved on to a new chapter, just as they have. There are exciting adventures and more incredible people to meet in this new chapter.

My advice is this: Embrace the change and open your heart, and you will discover a new world for yourself filled with extraordinary characters to accompany you.

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Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.