"I know that Mabel is a super hero. She has the ability to change this world tucked inside of her little frame. Her spirit is so pure and she is full of ease. She has changed lives of those around her from the very moment she was born and continues to do so every single day." - Super Mabel's Mom
Super Mabel was diagnosed with Neuronal Ceroid Lipofuscinoses (NCL), or Batten Disease, two days after her second birthday. Prior to her diagnosis, Mabel's family lived in a world of unknown. They didn't know what was wrong, what would happen, or what to do for their sweet baby girl who was suffering right before their eyes. Mabel has a redheaded older sister and brother who, along with their mom and dad, are Mabel's sidekicks.
When you look at Mabel's big brown eyes and beautiful smile, it is hard to think that she is suffering. "Our reality is that Mabel has had it really rough. Her brain seizes and her body twitches. She can't see well, eat well, or even go to the bathroom well. She is tired and cries non stop. She can't sit up on her own, can't seem to grow and has never met one single milestone on time or even close for that matter."
Mabel has an aggressive form of a terminal brain disease, but it is in this harsh reality that Super Mabel's most incredible super power shines through. Super Mabel brings great joy, peace, and change in the midst of great pain. "There is so much beauty here. So much more beauty than there is pain."
Mabel is only two years old and her small body has already degenerated, but Mabel's purpose has not been compromised. It's impossible to understand, and very difficult to accept, why any child would have to suffer in this way; but it is quite apparent that Mabel has a purpose in this world. Mabel is changing people. She's changing how they look at disease, illness, and disability. She's changing perspectives on what is important and what is true. Simply by being herself, this TinySuperhero is changing hearts.
One heart that has been transformed by Mabel is her sidekick mom. Mabel has inspired her mom to be her voice. Mabel has called her mom, and many others, to action. "Although I can clearly talk about her and our journey, it doesn't get easier. It's always hard realizing in the middle of what I'm saying that it's about our daughter. This isn't a cause that I just happen to be passionate about. This is our life. Our child. Our diagnosis. Our desperate plea to make sure others know the name of this sweet girl we call Mabel."
Super Mabel's family is committed to Mabel and other children suffering from rare diseases. They started a non-profit organization called Mabel's Able (Achieve, Believe, Love, Endure). This is their mission: "To raise awareness and help lower the statistics of rare and undiagnosed diseases. Living with a child who is undiagnosed is scary and lonely. Caring for a child in the midst of diagnosis is consuming and heavy. When people are educated and aware-they are more likely to help."
So today, on Rare Disease Day, we stand with them. We stand to support Super Mabel, Casen, Elijah, Brenna, Evan, Case...and the 30 million people that they represent who are fighting Rare Diseases in the US alone. We are proud to honor them as TinySuperheroes, and we are eager to educate, raise awareness, and inspire people to help. Super Mable needs a cure, and the movement starts with me and with you. Get involved with Mabel's Able, and follow Mabel's story on her mom's (beautifully written) blog.
"There are things in this life that are fleeting and insignificant. This is not one of them. This little girl, this day, these reminders-they are lasting."