Carly Chandler has had a significant impact on the State of Alabama in her short, 3-plus years on Earth.
Carly’s Law, a bill legalizing a new treatment method for children with serious neurological and epileptic disorders, unanimously passed the Alabama Legislature earlier this year in a rare moment of bipartisan unity.
RELATED: This 3-year-old is doing the unthinkable: bringing the Ala. legislature together
The bill, sponsored by Reps. Mike Ball and Allen Farley and Sen. Paul Sanford, legalized marijuana-derived cannabidiol, also known as CBD, as a treatment method and funded research at UAB to study the treatment’s success. CBD comes in oil form and has none of the intoxicating effects of marijuana that might make legalization susceptible to abuse.
This bill was, of course, named after Carly Chandler, a 3-year-old from Birmingham, Ala. who suffers from an extremely rare neurological disorder called CDKL5 that causes her to have daily seizures. There are believed to be less than 700 people in the world with the disorder, and there are only a couple hundred known cases in the United States.
The story of Carly and her parents — who absolutely would not take “no” for an answer while fiercely lobbying the Legislature on behalf of Carly and other children suffering from the debilitating disorder — captured the hearts of many Alabamians around the state earlier this year.
But the story did not end when Gov. Bentley signed Carly’s bill into law.
Her dad, Dustin Chandler, has been relentlessly rallying support and raising money for the International Foundation for CDKL5 Research. If he can raise $50,000 by Sept. 27, almost exactly a month from now, media personalities like Matt Murphy and politicians like soon-to-be-Congressman Gary Palmer and State School Board member Mary Scott Hunter will jump out of an airplane to help raise money and awareness for CDKL5.
But earlier this week, Chandler published a Facebook post that reminded many people just how tough it can be to watch a child you love struggle with the progression of a debilitating disorder.
Carly has recently had to begin living her daily life in a wheelchair, a new reality for the Chandler family.
Here’s what he wrote:
Seeing Carly in a wheelchair is a new reality that brings on a lot of emotion. A reality that many of our friends and people reading this may already know. But today was mine and Amy’s day to feel that unpleasant feeling of sorrow. The sorrow for Carly, not for ourselves. Facing the fact that she will more than likely never be “typical”, sets in a little deeper. I believe Amy said it best when she stated she would give her own legs to Carly if she would have a life of being mobile. Hearing your wife, the mother of your child, say something like that is absolutely gut wrenching, especially since I cannot fix it.
Please use what God gave you and do the best with it. Trust me, I have seen many lives squandered. Please don’t squander yours.I pray the same for Colton and Courtney. If you are blessed enough to be “typical”, be ever so thankful to the God. If you are a parent blessed with healthy children, love them and let them know it multiple times daily. Tell them you are proud of them. Don’t be foolish with parental responsibility. Be grateful, take parenting serious and don’t take anything for granted; for what you have today may be gone tomorrow.
Though there is sorrow, I don’t drown in it. I accept it for what it is and move on because that is what Carly and my family needs. One thing does come to mind that makes it easier and know that Carly will one day be triumphant against her disorder. It is the promise God made to all of us in Revelation 21:4.
“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”
There are no wheel chairs in Heaven.
If you’re interested in supporting the Chandler family’s efforts to raise money for CDK5L research, check out their online fundraising page.
Follow Cliff on Twitter @Cliff_Sims
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