The Rollercoaster of Rett

Being a special needs parent is a rollercoaster filled with highs and lows, love and heartbreak, blessings beyond measure and so much more. You find yourself flooded with emotions you never knew you would have, such as jealousy of other parents, panic of not researching enough for your child and swallowing your pride to accept help even when you don’t want it. My husband and I acknowledge that we’re very new to all this and have a lot to learn in how to care for a child with Rett. To those parents that have blazed the trail we thank you. You have been on this rollercoaster for a long time, and we have so much respect and admiration for you.

Since the diagnosis for our sweet Lily our lives have been forever changed. The calendar is now filled with doctor visits, therapy sessions and countless hours of researching a cure and treatments for this life changing disorder.

Andrew and I will forever remember February 13th, 2017 as a dark cloud and remember February 18th, 2017 as a day of hope. Our doctor informed us that Lily was diagnosed with Rett on a Monday and by Saturday we had thrown ourselves in head first and made contact with RSRT and Monica Coenraads. That day, I remember thanking God for empowering Monica and others at RSRT to have the strength to embrace this diagnosis and collectively decide to make the difference our girls need.

The progress RSRT has made provides the hope we need as parents that our silent angels have a light at the end of the tunnel. It gives us hope that our calendars will shift from therapy sessions, doctor appointments and seizure-filled nights to a day we can hear them speak their first word, watch them take their first step, ride a bike and maybe even embark on their first date (if daddies allow 😀).

Uniting our families and collectively taking action to speed the research is the only way we can truly take this disorder off the map. Andrew and I started with crowdfunding on RSRT’s platform, RettGive. It was easy to set up a campaign, and RSRT helped us every step of the way. We used Lily’s campaign to educate our immediate network about the disorder, the pathway to a cure and how they could help. We were overwhelmed by the support from our family, friends and co-workers. In less than 4 months we raised nearly $70,000 and we are still bringing in donations today. To continue the momentum, we are planning our first live event, Reverse Rett Charlotte in the fall of 2018. We can’t wait to see what we can accomplish next with the help of our new friends at RSRT.

To all the newly diagnosed parents out there, we know this is a club that no one wants to be a member of. We’re with you in heart and spirit and we understand that the days and months after diagnosis are so difficult. We would never want to sugarcoat that, and we know that every family needs to take whatever time they need to digest the news in their own way. Whenever you are ready, we hope you’ll get involved too with fundraising for RSRT and the research. It’s empowering to know that you can be the voice your child does not have (yet!). Together and through raising awareness and funds we can remove Rett from the equation.

Juliann & Andrew Edwards