“She is the strongest, toughest person we know! She does almost all of it with a smile that lights up the room.”
A Message from Georgia’s Family:
Georgia was just recently diagnosed with KIF1A disorder after years of testing and trying to get to the bottom of her issues. Georgia and her twin sister were such happy babies. They were born a little early. Georgia had a couple days in the NICU with respiratory and temperature issues, but after a few days she was home and healthy! She was such a chill baby who seemed laid back (proved this early assessment wrong pretty quickly) and happy all the time.
We never had any concerns until she started missing her milestones and was determined to have low muscle tone around 8 months of age. We immediately started PT and visits to neurology. While the neurologist wasn’t too concerned at the time, it wasn’t long before we were adding OT and speech. Georgia proved way back then that she is such a fierce, fearless, and determined little girl as she worked so hard for every bit of progress she made. She was even walking before her twin! She went through several MRIs and multiple rounds of genetic testing before we were finally given the answer that she had KIF1A disorder. We were (and still are a little bit) shocked by her diagnosis, as we nor her doctors ever expected her to have something degenerative. It’s definitely something that is not easy to wrap our heads around!
Every day, Georgia works harder than anyone we know! She refuses to let her disorder slow her down. She falls so much more than her peers, but she gets back up every time and keeps right on going. She is the strongest, toughest person we know! She does almost all of it with a smile that lights up the room. That doesn’t mean she won’t let you know when she’s not happy about something – she’s not afraid one bit to speak her mind. She is a boss and it serves her well! Georgia adores animals and says she wants to be an “animal doctor” when she grows up. She loves horses and is on a waitlist for therapeutic riding, which she is super excited about! Georgia is so gentle and loving with any animal she comes in contact with. Our dream for her is to see all her dreams come true! She also gives the most amazing hugs. She loves with her whole heart and makes sure you know it.
We are so incredibly proud of Georgia and know that she is going to do huge things with her life! We just pray that they find treatment for her and the other kids with KIF1A so that their bodies can stop getting in the way of their aspirations. As a parent, it is so terrifying to know that things will likely get much harder for your child. KIF1A has already caused her motor issues, balance problems, vision issues, and more. We pray that, by some miracle, she doesn’t regress like expected and that the many other possible symptoms don’t rear their ugly heads in her life. One thing that we have learned in our short time as part of the KIF1A community is that all these kids are so very strong and just incredible people! They all deserve a cure/treatment to be found so they can live their best lives!
Georgia, you and your amazing family are inspirations. I love you and your awesome hugs and am honored to be there watching your dreams come true!
Georgia,
Although I haven’t had the pleasure of meeting you, I do know your sister, Sydney, and your mom. I can tell that you are an amazing young person who has all the potential in the world, and that your family loves you endlessly. Sending lots of love and hugs to you and your whole family. I’m in your corner as well!
Georgia, we’ll be cheering for you every step of the way!! You’re so strong, girlie!
Georgia: You are a rockstar! Much love to you and your family on your journey! Your mommy is a dear friend of mine and I know that she loves you to pieces! Keep up the good work sweetheart.
Sending best wishes to Georgia and all of her family. Georgia should be proud of herself for always working hard and trying all the time to do her best.