The story of Ryan
“Our journey with rare disease started when our twin boys were born. One of the twins, Reynolds, had many complications at birth and in the 1.5 years leading up to his Costello Syndrome diagnosis. Costello is one of the rarest of the rare diseases and is part of a group of syndromes called RASopathies. It is a genetic disorder that affects many systems in the body. There is no cure for Costello and it requires a lot of management. Reynolds is 4 now, and has spent his life in and out of hospitals for treatments and procedures. He’s currently seen by 25+ providers, has quarterly cancer screenings and has gone through more surgeries/procedures than most will in their lifetime. All that being said, he’s the happiest and most determined kid you will meet. They call him the mayor at school and therapy.
Being a caregiver is hard, but he’s the reason I push on. Remembering all of his info from his providers and procedures is what drove me to start mymejo.com, because I knew I wasn’t the only one.
Since there are only less than a thousand people (mostly kids) living with Costello, we rely heavily on connecting with families in the Costello Syndrome Family Network and learning from each other.
I love connecting with new families who are just starting out on their rare disease journey. Over the past few years, I have learned so much from others and it’s my new mission in life to connect with families and help wherever I can. A simple, “I’m here if you ever need to talk” can go a long way.
One of my favorite quotes is from Patch Adams:
“You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.”
I think this quote speaks to people who live with a rare disease in that I may be rare but I am human. I am more than my diagnosis. Treat “me” first. Condition second.
I’m most excited about awareness in general with regards to rare disease. As more kids get diagnosed with rare diseases it’s becoming less rare to know someone who is rare. We are grateful for those rare individuals before us as they were pioneers paving the path.”