Since my daughter Iris’ diagnosis at age 5 1/2 with GM1 Gangliosidosis in the fall of 2013, I’ve become oddly accustomed to living life with GM1. It’s a very harsh reality knowing she has a chronic and fatal neurological condition. Still, after 3 1/2 years, for my sanity, I’ve partitioned that reality into the recesses of my mind.
Iris is “lucky” enough to have the juvenile onset form of GM1 which is less severe than other forms of the condition. We hope she will live into her mid teens, twenties, or possibly longer. But GM1 always becomes progressively worse as time passes. GM1 destroys the central nervous system which in turn impacts pretty much every basic bodily function.
We cope as best we can. We try our best to lead a happy existence despite our daughter’s grim diagnosis. We constantly remind ourselves to enjoy our daughter, our family, our lives, and the time we do have.
As we have learned to live with with GM1, we’ve found the new “normal” on repeated occasions. What might seem incredibly scary, e.g., watching your child lose the ability to walk, is very bizarrely just a part of our lives.
However, today was not normal.
Today, someone stole my daughter’s walker from a store parking lot. In a very brief lapse, the walker was accidentally left behind in the parking lot by the handicap spot. Realizing this mistake, Iris’ father returned immediately to the store. It was only a matter of minutes before he turned around to retrieve the walker.
Upon returning to the store, the walker was not in the parking lot, and it was not in the lost and found. After speaking to security at the store, we were told that security video footage recorded the theft. Three people on the video were involved: the driver of the car and two people who grabbed the walker.
Immediately, following diagnosis, we could not help, but ask “why?” GM1 is estimated to occur in approximately 1 in 200,000 live births. Some statistics indicate it may be even rarer. On the good days, we generally don’t ask “why” anymore. Today, I ask “why” once again.
Why steal a child’s walker? It was in the parking lot right by the handicap spot. Why not bring it to lost and found?
I suppose I know the answer. Perhaps, it seemed worth pawning? Online it is $625 without shipping costs applied. Perhaps, someone felt truly desperate for some reason which is unknown to me.
For my daughter, the walker is worth far more than $625. Her walker is part of her freedom and it is life altering. The walker allows her to walk somewhat independently at school. The walker helps her maintain as much muscle tone as possible. Walking helps preserve aspects of her health.
And let’s be completely honest, navigating the medical industrial complex to get the walker took some time. The process to get the walker involved physician approvals, appointments, and health insurance.
We share this story to let people know that stealing is wrong. Stealing children’s medical equipment is the low of the low. While this is “just” a petty crime, there’s a story behind that bright little yellow walker accidentally abandoned in the parking lot.
There’s a story of a little girl fighting for her life. There’s a story of somewhat frazzled special needs parents. We hope the police will track down the walker. If not, we will navigate the process of getting a new one. We’ve been there and done that. We know the drill.
Angry about the stolen walker? Yes. Will we survive? Yes.
Thank you to all our friends and supporters and those who offered assistance. We are hopeful that the police will turn up with the walker. Otherwise, for the interim, we will try to borrow another from California Children’s Services. Will our insurance cover another? I’m not sure.
The author of this post Christine Waggoner founded the Cure GM1 Foundation in April 2015 in honor of her daughter Iris and all the children who suffer from GM1 Gangliosidosis.
To make a donation to support GM1 medical research, please see: www.curegm1.org and www.sweetiris.org for more information.
Sweet Iris 