by Rachel Petty
CARTHAGE, Tenn.—When Kim and Jason Sanders were expecting their daughter Madelyn, Kim remembers speaking over her before she was born to tell her all the things her parents wished and dreamed for her.
You will do incredible things. You will bring a smile to the faces of everyone you meet. You will make a difference in the world.
“All that is happening,” Kim told Smith County Insider. “Just maybe not in the ways we originally had in mind.”
Madelyn Dare Sanders was diagnosed with Pitt Hopkins Syndrome in early spring of 2018, but she and her parents are not letting that diagnosis define her.
Instead, they are grounding themselves in faith, staying away from negativity, and maintaining high expectations for Madelyn’s future.
“We’ve seen her progress in ways that she’s not supposed to be progressing, and that’s huge,” Kim said.
Kim explained that she had an easy pregnancy with Madelyn, and aside from a few minor things at birth, there were no red flags at first. However, after her eight-week checkup and her first round of vaccinations, Kim and Jason began to observe some frightening changes in Madelyn’s behavior. Madelyn began to experience head lag, loss of eye contact, and she stopped rolling over and supporting herself with her arms.
Kim and Jason immediately began to pray and search for answers. After many doctors’ appointments and two mis-diagnoses, Madelyn finally got the results from a genetic test that led to her diagnosis of Pitt Hopkins Syndrome.
Pitt Hopkins Syndrome is a genetic condition that is caused by a deletion on chromosome 18. Madelyn is missing 48 genes on this chromosome, and the TCF4 gene is the one that specifically marks her condition as Pitt Hopkins. The TCF4 gene is responsible for helping the body make connections between the muscles and the brain.
“She can do things; she just has to be taught,” Kim explained. “There’s a barrier there, a roadblock. But our attitude is that we’re just going to go around it or go through it.”
“Everything there will work properly. The brain just doesn’t make it work properly,” Jason added.
Kim and Jason sought out a care team that would be supportive in helping them understand what they could do to help Madelyn reach her full potential. Madelyn participates in several types of therapy and sees three different doctors, one of whom is a geneticist who specializes in rare genetic conditions.
Madelyn’s current treatment plan includes supplements to improve her mitochondrial function, a very strict diet, and teaching tools that help provide feedback and strengthen connections between her muscles and her brain.
One example of a teaching tool that Madelyn uses is her pink glasses, which have corrective tape covering the part of the lenses closest to Madelyn’s nose. Instead of increasing the strength of Madelyn’s prescription to help her see, the tape on the glasses helps strengthen her eye muscles. When her eyes are crossed, the tape makes her vision blurry, so this teaches her to look straight ahead to train the muscles in her eyes and improve her vision.
“Once she catches on to doing something, she’s got it,” Kim said. She recalled that Madelyn’s geneticist had told them how brilliant Madelyn is; the trick is learning how to best communicate with her and teach her to make connections.
Madelyn’s older sisters—Kayla, Courtney, and Ellie—constantly help her make those connections by coaching her, cheering her on, and loving her unconditionally. Kim joked that with them around, therapy never ends!
Madelyn is 19 months old now, and although not every day has been easy, Kim and Jason have continually seen the fingerprints of God in every step of their journey.
The current step of Kim, Jason, and Madelyn’s journey involves raising awareness about Pitt Hopkins Syndrome.
“I had it on my heart to do something,” Kim said. “Because everywhere you go, everywhere you look…everybody is like ‘What is it? I’ve never heard of that.’ And when you look it up, you know what you see? Brad Pitt and Anthony Hopkins,” she laughed.
Kim set out to shed a light on Madelyn’s diagnosis and share her story with as many people as possible.
One of the first steps Kim took was sending a proclamation requesting an official Pitt Hopkins Awareness Day to the Governor of Tennessee. Kim emailed this proclamation on a Monday, received confirmation from the Governor’s Office the next day, and had the official proclamation in her hands by the end of the week.
A process that could have taken up to three weeks was completed in only one, and September 18 has been declared official Pitt Hopkins Awareness Day in Tennessee.
To celebrate the first annual Pitt Hopkins Awareness Day, Kim and Jason are planning a benefit fundraiser on Tuesday, September 18, 2018, at the Smith County Ag Center. Doors will open at 5:00 p.m.
All of the proceeds from the event will be donated to the Pitt Hopkins Research Foundation, which has three different clinics in the United States specifically designed to help those who have been diagnosed with Pitt Hopkins. Currently, the Research Foundation is working on developing and administering treatments that can entirely reverse the symptoms of Pitt Hopkins.
You can learn more about the Pitt Hopkins Research Foundation at pitthopkins.org. Madelyn’s event is even featured on the “Events” page!
“We want to create an event to spread awareness and complete joy,” Kim said.
She and Jason have been overwhelmed by the love and support they have been shown by the community so far, and they are incredibly excited for the upcoming event.
The event will feature a cake walk, a silent auction, unique games, and catering from Smokin’ F BBQ. Josh Kirby with Blackwell Realty and Auction will be the emcee for the night.
Smokin’ F BBQ has generously agreed to donate 100% of the food for the event, which means 100% of the profits from meal tickets will go towards funding a cure for Pitt Hopkins. A meal ticket for plate of pulled pork and sides can be purchased for $10. Contact Kim Sanders via Facebook messenger or by phone at (615) 489-3830 to purchase a ticket!
“We want a big crowd,” Jason said, encouraging people to come. Jason stressed that a lot is happening at the event, and guests should be prepared to get there early and stay to have fun!
“We want everyone to leave full and happy and ready to come back next year!” Kim said.
When asked what else Kim and Jason would like the readers of Smith County Insider to know, Kim simply said, “I don’t know how we’d make it through it without the joy of the Lord. We are going to use Pitt Hopkins as a platform to show how God can work and how He can work miracles, because we’re seeing it.”
Kim and Jason strive to find humor and joy in the journey, and they celebrate and support Madelyn in every way they can. They have chosen Mark 11:23 as a focus for their awareness campaign because it stresses faith paired with the action of believing that miracles will happen and mountains will move.
“We are all she’s got,” Kim said. “We have to be her voice until she gets hers. We can’t give up on her.”
You can follow Madelyn’s journey and learn more about the September 18 Pitt Hopkins Awareness Day event on the Team Madelyn Facebook page.