Grayson’s Ladder: Climbing For A Cure
OOLTEWAH, Tenn. (WDEF) – Alexander’s Disease is a rare disorder of the nervous system, commonly described as a Leukodystrophy, and a young Ooltewah boy and his family recently found out he suffers from the disease.
Having a rare disease is something that affects a small percentage of the population.
5-year-old Grayson Ledbetter is 1 of 100 patients around the globe that is searching for answers.
His family is climbing a ladder for a cure in hopes to fund research and find a miracle for their little boy.
“Many times I get fearful of what the future could look like for him but if I focus on today he is having good days right now.”
Grayson was born June 29, 2012. Weighing just 4 pounds, his mother tells us he was born with a two vessel cord.
After Grayson’s birth, he went home from the hospital with just feeding issues.
Fast forward a year, and that is when Grayson’s mother started noticing developmental delays in her baby.
Doctors told her not to worry. She was reassured that nothing severe was wrong, and he would catch up.
But, earlier this year, little Grayson was staying the night with his grandparents when he had a seizure.
“My dad called and said he is shaking and unresponsive and I told my dad to immediately hang up the phone and call 911.”
During Grayson’s seizure, he was brought to the hospital where, just 24 hours later, Grayson’s father received the news that no parent would ever want to hear.
Grayson’s mother remembers, far too well, the day she went to visit his pediatrician to get the results of her son’s MRI.
She said, “I will never forget that day, he pulled us in a private room and we were in rocking chairs and I remember his hands right here and tears just pouring down his face because no one really saw this coming.”
Laura and her husband learned that day that their son, Grayson, had a Leukodystrophy. A disorder that Chattanooga physicians haven’t seen in years.
This meant that Grayson would need a specialty center to get answers.
Grayson’s parent’s came across CHOP, The Children’s Hospital of Philadelphia. There, a neurologist told them Grayson had Alexander’s Disease.
She explained, “Over time these children loose ability to walk, to talk, and to eat and there’s no cure and eventually the disease is fatal.”
She has also been told by doctors to keep Grayson strong, and enrolled in therapy – something he participates in everyday at Siskin School.
Currently, there are still no available treatments for the disease, but Grayson’s mother says she isn’t giving up hope.
Recently, Laura started a website for her son – graysonsladder.org, to raise support, awareness, and funds for a treatment and eventual cure to Alexander Disease.
Keeping their faith, Grayson’s family has a mission to ensure kids with this disease and other forms of Leukodystrophy live long, fulfilling lives.
“We are strong in our faith and we are praying for miraculous healing for Grayson, and we will continue to pray that prayer.”
Laura’s family lives by the motto “Today is a good day”, soaking up every moment and smile from this happy little boy, while encouraging others who might be facing similar challenges.
“One day at a time, I think our life has been put into a different perspective because we don’t know what 10 years looks like so everyday is absolutely priceless, so we make sure we get those extra hugs, snuggle time.”
So what causes Alexander’s Disease? In some cases it can be genetic, but for Grayson, his mother says it’s the result of a genetic mutation that occurred when he was formed.
If you would like to learn more about Grayson’s Ladder and how you can help fund research for Alexander’s Disease, check out their website.