If someone would have told me four years ago that some of my closest friends would be online, I would have laughed. 

How do people truly form friendships with people they’ve never met in person?  

I had never participated in Chat Rooms or anything of that nature. 

Until my child with a rare genetic disorder came along, I was clueless as to how VITAL such friendships could be.

When you receive a rare diagnosis for your child, loneliness sets in fast. 

Having a child with a baffling condition that lacks an abundance of information will make you feel completely isolated.  

You feel like there’s no one else in the world that could possibly understand what you’re feeling, or what you are going through.

Thanks to our remarkable geneticist, we found an online support group quickly, for parents just like us. 

From that group, we swiftly found a Facebook support group SPECIFIC to our daughter’s rare diagnosis.

We found families with children facing the same challenges as her. And their similarities were uncanny!  

From the medical issues, therapy methods used, to the same adorable facial features, our kids had so much in common.  

From the moment we found this group, our lives changed. 

We were HOME. 

We met people online from all over the globe, who were in the very same boat as us. 

The support we found was incredible, and it differed from what our own family and friends could give us, despite their efforts. 

Although our family and friends tried, they just couldn’t fully grasp what we were going through.  

This group was filled with meaningful information, guidance and a wealth of kindness and compassion.

In the four years since we found this life-saving group, we’ve even been fortunate to meet several of our “virtual” friends in person! 

We have met three wonderful families from our own country, The US. 

Gratefully, we were even afforded the opportunity to spend time overseas with families, on our same journey, from England and Holland. 

Meeting in person and having our children spend time together was phenomenal. 

Words can’t express how connected it made me feel.   

It’s funny…but two of the families overseas, although thousands of miles away from us, are now like family. 

The support we receive and give to one another, and the validation of each other’s feelings is priceless.

We’ve cried together over sad times and we’ve rejoiced and celebrated together the achievements of our children. 

We know that when we are in a crisis, seeking advice, or just needing a place to vent, we have each other. 

When things are going splendidly and we want to share the sheer joy of a milestone occasion, we have each other.

When you find someone who simply “gets it” and truly understands because they live it too, the loneliness fades away.

When you have somewhere to go for support without judgment, even if it’s through logging on to your computer, you are not alone. 

It’s imperative to seek out these kindred spirits, when your child has a rare diagnosis. 

I’m thankful every day for these real-life friendships that we’ve forged. 

I can’t imagine where I would be, four years into this adventure, without them.  


Things you might like

Check out the Scooot

The mobility solution that evolves with your child’s needs

Find out more

Other articles you might enjoy...

Special Needs

“How do you cope? I know I couldn’t”

This is a question/statement I hear quite often. 

Special Needs

“I’m Sorry for becoming an Introvert” - Raising a Child with Special Needs

To my friends and family, I would like to apologize for becoming more and more of…

Survey icon

Public Opinion…

Do you suffer from anxiety?