About Us

Rett Syndrome is a genetic disorder caused by a mutation of the MECP2 gene on the X chromosome. It occurs almost exclusively in females, and about 1 in every 15,000 births. There is a wide variety of symptoms and symptom severity. Children with Rett Syndrome develop normally until around 6-18 months of age when they go through a regression period and often lose previously acquired skills such as their ability to walk, talk, or have functional use of their hands. Other common issues include breathing abnormalities, cardiac issues, seizures, difficulty swallowing, and scoliosis. It is import to note that these kids are fully "there", they are just trapped inside their bodies. They are incredibly intelligent and emotional beings. At this time there is no cure, but through research, we are on the verge of treatments, and hopefully soon, a cure!

Ryleigh Jo Rogers was born at 9:51pm on September 26, 2019. She was the sweetest little thing. Her big sister Quinn was so smitten with her. Ryleigh was the happiest, most easy-going baby. She grew and met every milestone on time--except for crawling. We thought we had another "Quinn" on our hands. Quinn didn't crawl until 14 months old with the help of physical therapy. We thought Ryleigh was going to be the same. So at 9 months old we signed her up for PT. She was low tone, but we worked everyday with her, just waiting for her to take off. But she didn't. We heard about the possibility of chiropractic helping so we took her three times a week for several months. After thousands of dollars spent with no improvement, we were encouraged to see a neurologist. The neurologist scheduled us first for an EEG. All was normal. Next was an MRI. Again, no abnormalities. Finally, she said she wanted us to do a couple specific blood tests to check for genetic conditions. She didn't tell us which ones, just that there may be one specific to girls. We didn't think too much of it, until we googled female-specific genetic conditions and saw Rett Syndrome pop up. Our stomachs dropped as we read symptoms -- most of them we could check off as something Ryleigh had. Through tears and panic we called the neurologist to ask if Rett was something she was testing for...it was. A few days later on March 3, 2021 we received the call. Ryleigh's test came back positive for Rett Syndrome. Pure devastation and so many tears. What was our sweet daughters life to become? It truly felt like a death had happened in the family. Kari's sister came over just to hug us. Her mom cried with her. Aaron's mother drove 2 hours immediately to provide support. We slept because being awake just felt like a bad dream. Life would be forever changed. Over the next few weeks depression set in. Getting out of bed for the same mundane day was so hard. But through that time we felt the presence of God. Some call it denial, but we know it was God calling us to rise up and commit to giving Ryleigh the best, happiest life ever, filled with so much love. We felt a peace fall over us. We were going to be okay and also infinitely blessed. God was showing up in ways we could never dream. There are hard moments...hard days...but there is so much love. Our life looks different than others, but we are living a beautiful one. We have so much support. Our kids are going to grow up with so much compassion in their hearts. We know that Ryleigh has changed us for the better and we can't wait to see where life takes us.

While other organizations exist to provide written resources and to raise money for research and a cure, Rett Friends was created to help individual families affected by Rett Syndrome. Rett Friends wants to help families every step of the way. From days to weeks right after diagnosis, to years down the line, families need support in every aspect of life. We aim to provide tools in the home to make life easier. Through fundraising events and donations we hope to help Rett families all over the country and make them our personal Rett friends.

CALL TO ACTION:

We are starting with toys! Ryleigh, our daughter, loves to play, but it has been very challenging to find the right toys for her. We have been introduced to adaptive toys -- what a game changer! Just about any toy that you press to activate can be turned into an adaptive toy. Luckily, we have a Rett Friend who has the knowledge and tools to take those ordinary toys and turn them into adaptive toys.

Our first act as Rett Friends is to send out gifts to families who have daughters with Rett Syndrome. These will include an adaptive toy, t-shirt, and a personalized bib for our little butterflies, along with a gift card to a local restaurant for their caregivers.