Today is Magnolia’s birthday. 10 years old! She is in so many ways everything I would hope my 10 year old would become. She is wise, and smart, and defiant, and demanding. She is strong and sweet and funny. She is resilient and tough. But she also still suffers from Rett Syndrome, which is only notable because I thought there would be a cure or treatment for Rett Syndrome by the time she turned 10.
When Maggie was first diagnosed, in 2013, we were told that there was hope that a treatment or a cure would be available within 5 years. We were told that the science was moving so quickly she may be able to get some medicine before her 10th birthday. Today she turns 10. There is, sadly, still no treatment for Rett Syndrome.
I always saw 10 as a milestone of childhood and had fully hoped we’d be able to give her a few years of being a kid without Rett. I know technically she still has a few years left of being a kid, but the double digit years are different. She’s a tween now. Her whole childhood was harder because of the disorder. I just wanted her to have the opportunity to be a kid, to gossip with friends, to play an instrument, to bike to her girlfriend’s house, instead of having to struggle to breathe, or to walk, or to hold a cup. But she’s 10 now, so all of her childhood memories will be of the times she had Rett Syndrome. Let me be clear, it is not a complaint about a life lost – we have made some incredible memories in spite of the difficulties of Rett Syndrome. And now we have a tween – pretty soon the horse posters will come down and One Direction posters will go up or whatever tweens like. The clothes will change from unicorn prints to animal prints (if she’s like her mom). She will be different. But that’s ok. She will continue to grow into the amazing person we already know her to be.
We made a documentary to celebrate her and to share what her life is like with this disorder – to share her struggles but also her triumphs. It was so that we could have a positive impact on her life, and all the people suffering from a rare disease like Rett Syndrome. But it was more than that. It was so we could feel like we were doing all that we could – that we weren’t leaving a stone unturned, an opportunity to raise awareness unmet. It was so, as I say in the movie, “when there’s a cure, she’ll have stories to tell.”
On December 1st, for the entire month of December we’re going to make the film available for a limited number of people at www.magnoliashopedoc.com. Please join us by purchasing a ticket for $10 to celebrate Maggie being 10 so these next 10 years can have an even better story to share.
Blog by dad. Tears shed by mom.