Kelly speaks up for girl, 10, in U.S. House
U.S. Rep. Mike Kelly, R-16th, raised his voice in the name of a 10-year-old girl as he spoke Tuesday to his colleagues at the House of Representatives.
“(I'm) speaking for Maddie (Stewart), because she can't be here to speak for herself,” said Kelly in his address. “What she's saying is please, please, whatever you do, don't stifle innovation. Don't make it impossible for us to move forward.”
An Allegheny-Clarion Valley elementary schooler, Madelyn “Maddie” Stewart of St. Petersburg, Clarion County, was diagnosed with Pearson's syndrome, a condition that mutates genes in the body and prevents cells from producing enough energy for the body to function properly.
Kelly read the letter, written by the girl's mother, Sara Stewart, at the Ways and Means Committee hearing on H.R. 3.
The bill establishes several programs and requirements relating to lowering the price of prescription drugs.
Kelly took the stance that the bill limits potential growth and innovation to find a cure or treatment for conditions such as Maddie's.
“I think that sometimes we get so caught up in the politics of Washington, D.C., that we forget about what the policy is really about, and it's about people,” Kelly said. “It's about a little girl in St. Petersburg, Pa., who was diagnosed at 1-year-old with Pearson's disease and what she is doing.”
Sara Stewart said she sent the letter Oct. 17 and received a phone call from Kelly's office a couple of days later asking if it could be read aloud. She said she had no idea Maddie's story would make it that far.She was surprised by the intensity with which Kelly spoke. His comments were posted online.“I think passionate would be a good word,” Stewart said. “I was very humbled and slightly stunned.”Stewart said her daughter was diagnosed with Pearson's before her second birthday, and children with the condition typically don't reach age 3.“I felt that something was wrong,” she said. “Something was not quite right.”For about three years, Maddie was dependent on blood transfusions to survive, which Stewart said is typical for children with the condition.But Maddie beat the odds by surviving beyond a point where she needs consistent transfusions. She is a rare case within the parameters of a rare disease.
Every day for Maddie needs to be strictly regulated so her body has enough energy for basic functions, such as her ability to regulate temperature.“On a hot day, we have to help cool her down, because her body doesn't have enough energy to do that on its own,” Stewart said.Energy efficiency takes on a whole new meaning for Maddie.“It's like running an entire house on a AA battery,” Stewart said.If children survive Pearson's syndrome through a certain, undefined point, they no longer need blood transfusions to survive, but they develop Kearns-Sayre syndrome, which leads to additional health problems.“We take each day very cautiously and prepare for what we can,” Stewart said.Today, Maddie struggles with type 1 diabetes, kidney failure, increased sensitivity to sun damage and hearing and vision loss.“With all that being said, most people not meeting her picture a child that is very fragile and maybe not active,” Stewart said.“Maddie is surprising. You really couldn't pick her out of a crowd of kids as this sick kid.”Stewart said her daughter goes to school, and she interacts with other children. She said Maddie has good days and bad days, but getting to be with other children and make friends is important.
Stewart said there has been a lot of support for Maddie from friends, family and the community that have helped the family stay grounded.She and her husband, Michael, who works at Sonneborn in Petrolia, grew up in small, tight-knit communities full of people willing to help.Stewart said her family interacts with its support community through the Facebook group Maddie's Followers, where they post photographs and updates on Maddie.
She said this year, they posted about Maddie's birthday and received more than 500 birthday cards in the mail.“It's nice to remind her that she's still just a kid,” she said. “It's fun to get a bunch of birthday cards and stickers and just be kids.”Having almost lost their daughter multiple times, Stewart said she and her husband are willing do whatever they can to help her.“It comes down to finding the means to keep her alive or losing her,” Stewart said. “I'm one of many parents fighting to try and save our kids and trying to find hope.”She said there is some hope in the form of clinical trials overseas that could make their way to the U.S.
Stewart said despite all the growth, research into the disease needs more support.“There's not enough kids to research, and the kids are too frail to research,” Stewart said.That message must have resonated with Kelly. In addition to telling Maddie's story on a national level, Kelly asked his colleagues to reconsider the proposed bill.Kelly said Congress had other legislation that was scrapped in favor of H.R. 3.“It was over in the Senate and we thought, you know we are going to come up with a solution, except for one thing,” he said. “All of the sudden, H.R. 3 appears and we said this is what we decided to go with and we're walking away from the work that we've already done.”Kelly said the government has an opportunity to help those struggling to pay the costs of prescription drugs without interfering with the research and the innovation that could save Maddie and people like her, or at least ease their suffering.“I suggest we go back and work across the street with the Senate and come up with something that can go into law, can be signed by the president and can save lives,” Kelly said.
