Parents: Josie (mom) and Joe (dad)
Child with Rett syndrome: Charlie, age 6, diagnosed at age 2
Sister: Lucy, age 4
How does Charlie inspire you?
Charlie is the kind of girl you can’t help but fall instantly in love with! Her eyes draw you in like a magnet and reflect back the purest love mixed with an old soul. Charlie inspires us and those around her by her dynamic personality that wants to do and be a part of it all!
Rett syndrome impacts her daily, but she doesn’t let it define her. Despite all the obstacles she remains strong and positive and smiling through all the pain, and she inspires us to act with the same grace and attitude as her. We try to focus on all that she can do. She loves life to the fullest and does things like inside skydiving, adapted surfing, extracurricular activities, and traveling! And she’s so social! It’s our goal to give her all the experiences and fun she deserves. We feel lucky to share life with this wonderful girl!
How would you describe the relationship between Charlie and her sister, Lucy?
Life with Rett Syndrome can be hard and it shows you the lowest of the low times and the highest of the high times. One of the most beautiful things we have witnessed as a family is the bond between Charlie, who is 6, and Lucy, who is 4. Love needs no words, and they have such an understanding of each other. Lucy is a huge advocate for Charlie! Lucy always introduces Charlie to everyone and says, “this is my sister Charlie, she has Rett syndrome and she uses a wheelchair and talks with a Tobii. Isn’t that neat! Let’s make sure we include her.” As a parent these moments bring happy tears to our faces.
Despite how difficult Rett syndrome is on the family, it also fosters an unbreakable bond between these two and has made Lucy a stronger, more open and empathetic person. We love to see the moments between the girls when they have their own inside jokes and giggle together. Charlie corrects her sister on the Tobii – as an older sister should – telling her “no,” or calling her cheeky or naughty when Lucy steps out of line.
Lucy is also one of Charlie’s biggest cheerleaders and attends all her therapy. Lucy yells with excitement and encouragement when she sees that Charlie is standing for a long time or holds onto a tool or toy for a long time, or does well on the Tobii. Charlie doesn’t have many words, and one day we asked what everyone wanted for dinner. Charlie said in the sweetest voice, “burger!” We all screamed with excitement, and Lucy made sure we had burgers for the entire week. As a parent we hope to always bolster the love they share.
How have you taken action to accelerate a cure for Rett syndrome?
Fundraising started off for us as a way to cope with the diagnosis and a way to cope with the overwhelming feeling that this is something we can’t fix for our girl. We have made our fundraiser, Charlie’s Angels, an annual event in October, as Charlie was diagnosed on October 19. October also happens to be Rett Syndrome Awareness Month. Our fundraising event is a fun fall festival where we have been able to raise money for a cure, educate, and advocate, as well as celebrate our girl Charlie! We use RSRT’s crowdfunding platform, RettGive to raise funds for our event. It’s really easy to use, and it gives our supporters confidence that their donations go directly to RSRT and the research.