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Never Isolated

My whole life I’ve always felt isolated. My brothers are the only ones who have ever understood my level of suffering—they have the same disorder as I do. Never before had I met someone with the same illness and struggles outside of David and Tyson.

However, no one even knew what the disorder was for twenty-seven years so connecting to others with the same hurts was near impossible.

If you’ve been following my blog, you know that Joni Eareckson Tada led my family and I to connecting with a family that has two adult children who’s close to Tyson and I’s age and struggle with similar symptoms. After running blood tests, we were finally diagnosed with Riboflavin Transporter Deficiency Type 2 just like Mallory and Zach Holler who are now good friends of ours. Unfortunately, we have only been able to meet online—never in person. At least, not yet!!!

However, earlier this month, I had the pleasure of meeting two families who have someone diagnosed with RTD type 2. Meeting Megan, Ava, and their families was an amazing and encouraging time!  We shared stories and learned that their stories align with ours.

Meeting Megan, Ava, and their families helps me to see that I am not alone in this RTD battle.

I was able to see different modes of communication based on their level of hearing and vision loss. For example, Ava’s family is from the UK and uses British Signed Language—how cool is that! I want to learn! (If you know British Signed Language, come teach me!!)

While Ava’s family uses British Signed Language, Megan has a cochlear implant which helps her hear but she also needs assistance through finger spelling (spelling each letter using the American Sign Language alphabet). Finger spelling and lip-reading work in tandem for Megan to communicate with others.

I use American Signed Language and read lips to my best ability.

One thing we have in common is that all three of us require close-vision signing since we all are legally blind. It’s truly amazing what a family can accomplish when they deeply care for one another—they always find a way!

I will always treasure the time I had with these families since it is not every day that we get to connect with one another in person. I’m thankful to Keith Massey, the founder of CureRTD, for connecting the RTD families together and for benefiting the RTD community.

If you would like to read more about the Hollers, Ava, and Megan, click HERE!


Awesome readers, can you share a time when you have felt isolated in your life?

When did you feel like someone “got” you?

We all need encouragement at some point so leave some kind words below!

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