LOUISVILLE, Ky. (WHAS11) – It’s not often you see an 11-year-old in our nation’s capital serving as an advocate for the health system.
From Senate Majority Leader Mitch McConnell to Indiana Senator Trey Hollingsworth, to Congressman John Yarmuth and exploring, D.C. – it’s an opportunity most with heart failure don’t have.
For Jeffersonville, Indiana native Scharnese Cook, it’s been a journey two years in the making.
From healthy to heart transplant
It all began on Mother’s Day 2015, as Scharnese’s mother Shi’Lese Stover describes. She says Scharnese had been feeling ill at the time and she knew something was off.
“We were at a track meet and right after that – something wasn’t right. Parents know their own children and she couldn’t breathe [and] she really couldn’t finish the track meet. She would scoot instead of run,” Stover said.
Stover’s motherly instinct kicked in and took Scharnese to the doctor thinking that it was just an asthma attack. Doctors performed chest x-rays and noticed an issue. They told Stover to immediately take her daughter to Norton Children's Hospital where she received shocking news.
Doctors told her that Scharnese was in heart failure and was diagnosed with cardiomyopathy.
Cardiomyopathy is a disease where the heart is enlarged and the heart muscle stretches making it difficult for it to pump blood.
It was something hard for Stover to digest because she says Scharnese was healthy, active and played lots of sports.
"About 50 percent of those patients who are present with dilated cardiomyopathy end up having a transplant or not surviving by 5 years," Dr. Joshua Sparks, Scharnese's Cardiologist, said.
“I go from asthma attack to heart failure all within a couple of hours. It kind of changed our life,” Stover said,
For two months, the hospital was the living quarters for Scharnese and her family – a time filled with nervousness and the unknown.
“She was on breathing machines and she was on a lot of different medicine and she had to get a couple of surgeries – so it changed our life,” Stover said.
"It was very nerve-racking because I didn't know what was going on, I'm not a kid that gets sick like that," Scharnese added.
Eventually, Scharnese would need a heart transplant to increase her chances of survival.
“It kind of hit – it came on really quick. Our family and everything had to come in. They told me all within that one week – my daughter kind of passed out and they told me I had to put her on the transplant list. My daughter is on a breathing machine and she’s not able to talk to me anymore,” Stover said. "I have my daughter here and they're telling me she needs a heart – how do I pay for that?"
It’s a thought that would cross any parent’s mind.
Scharnese was placed on a waiting list and was eventually able to receive that crucial transplant, thanks to Medicaid.
“Without healthcare my child would not be here. Without Medicaid my child would not be here today,” Stover strongly said.
She was back home after eight weeks and Stover said Scharnese has made wonderful progress.
Stover says Scharnese has had a couple of incidents and is immune suppressed – meaning she’s able to pick up germs or get sick easily.
Advocating for kid’s health
It’s now two years later and Scharnese is continuing her road to recovery.
Scharnese and her mom were asked to travel to Washington D.C. to lead a delegation for Speak Now For Kids, an advocacy group.
The group helps raise awareness of what families’ face is the ever-evolving healthcare system.
“I received a phone call – I was asked to attend Washington D.C. and I was like why? They told me they were actually going to advocate for children. This was just ideal – this was something that you know touched me as well as my child and other children – to advocate for children for Medicaid – for their healthcare. There’s so many children out there that things go unnoticed. They need to be able to have that healthcare and their parents don’t need worry.”
Scharnese, her mom along with representatives from Norton’s Children’s Hospital made the journey to Capitol Hill to speak on children’s health as representatives of Kentuckiana.
"There's no better family to go and advocate for health needs,” Dr. Sparks said.
While in D.C., Scharnese was able to meet with lawmakers during Family Advocacy Day where she met the likes of Congressman John Yarmuth, Senate Majority Leader Mitch McConnell, Indiana Congressman Trey Hollingsworth and House Speaker Paul Ryan.
Most importantly, Scharnese shared her personal story and discussed the importance of Medicaid for many families in need.
A whirlwind trip meeting lawmakers and seeing important monuments is something mother and daughter will forever cherish. Stover says this journey with Scharnese has been a test but it’s most definitely a testimony.
"She's a living testimony, she's walking, she's breathing, I saw her when she was down and she couldn't breathe on her own. Our new normal is going to the doctor, going to the specialist, lab work, things like that – making sure you wash your hands constantly [and] watching your surroundings and who you’re around. "
Scharnese is heading to the 6th grade in the fall, continuing to be a vibrant child with an even healthier chance at life.
Here’s the full statement from Congressman John Yarmuth on the recent meeting:
It was very inspiring to meet with Scharnese and hear her story. This is a young woman who is winning her battle against a rare heart condition, but decided to spend her 11th birthday walking the halls of Congress, fighting to protect access to care for countless other children throughout Kentucky and across our country who rely on Medicaid. Scharnese and her mother made clear the toll a diagnosis like hers takes on a family’s finances, employment, and so many other elements of life we might otherwise take for granted. As Republicans in Congress continue to pursue efforts to weaken Medicaid, end protections for pre-existing conditions, and kick tens of millions off their health care coverage, I’m glad we have Scharnese’s voice in the debate and I’m proud to be fighting for her and her family.