In the News
Critically Loved is helping parents of critically and chronically ill children
Article in OLDHAM ERA NEWSPAPER
Students enrolled in the Oldham County Young Adult Transition Program helped a local nonprofit by assembling Medical Binders on Feb. 14. The nonprofit, Critically Loved, supports parents of chronically and critically ill children in our region at no cost. They partner with pediatric health partners to provide a “getting started” medical binder near the onset of their child’s diagnosis. Helping children with a diagnosis ranging from autism to life threatening cancer, Critically Loved guides parents through issues like setting up a medical intervention plan at school, health insurance and medical bills. Oldham County School employees Sarah Stepp and DeeDee Evers arranged for the project. Evers also serves on the Board of Directors for Critically Loved. To learn more about Critically Loved and the assistance they provide, visit their website at www.criticallyloved.org.
Article in The Sentinel News
Learning a child has a life altering diagnosis can take an emotional toll on a parent. But TyiaLynn Mikels knows all too well that raising a child who is critically or chronically ill also has its struggles when it comes to navigating informative resources.
Her daughter, a Shelby County native and 17-year-old senior at Cornerstone Christian Academy, has suffered her entire life from illnesses that have placed her in and out of a hospital rooms since she was five-years-old.
Celia Faith, which means Blind Faith or Heavenly Faith, her mother explained, was never expected to survive.
“Doctors wanted us to abort her in the womb,” Mikels said. “They said she would never be born alive.”
She beat those odds but 17 years later she continues her fight. Celia’s biggest issue stems from life threatening internal bleeding caused by vascular malformations in her intestinal tract.
“They rupture and bleed all the time,” Mikels explained.
Because Celia is only one of six children in the United States struggling with the same diagnosis, they have little information to go on.
“They don’t really know her outlook,” she said. “There’s no way to tell what the prognosis is going to be.”
Regardless, Celia has a positive attitude.
“She doesn’t complain much,” Mikels said, noting her daughter, however, is often in pain, has little energy and suffers from headaches. “But she always has such a positive attitude.”
And though they don’t really know what to expect, they see each day as a blessing.
“We just take each day as a gift and enjoy the time we have with her,” she said, noting they don’t let her diagnosis limit what she can do.
In fact, several vacations and trips have been foiled by ER trips.
“She’s visited a lot of hospitals around the country but we still try to live life,” Mikels said. “That’s how she wants it. That’s just our life and that’s okay.”
And another trip is in Celia’s future.
She was recently approved for a Make-A-Wish trip.
Mikels said her daughter plans to request a cruise to the Mediterranean. “She wants to see history.”
Sharing the love
Mikels has learned a lot over the years and she’s using that knowledge to help others going through the same situations.
“Kids with Spina Bifida, Down Syndrome they have wonderful resources in this area to help them navigate life,” she said, noting that for others, however, there’s few places to turn for information.
“I spent years learning to manage insurance and denials and school,” she said.
Mikels said she homeschooled her daughter until the eighth grade because she did not know about medical intervention plans at school. “Nobody told me,” she said.
So last year, she started the non-profit organization Critically Loved to help other parents navigate insurance and similar issues. “It’s a practical resource,” she said.
The information, for example, includes step-by-step instructions applying for Medicaid and medical waivers to help with bills.
“It’s a complicated process and parents don’t know how to even start to apply for that for their child,” she said.
Mikels says she has partnered with local pediatric health providers, including Shelbyville’s Future Hope Pediatrics and Associates in Pediatric Therapy, to information out.
“We provide a Getting Started binder for parents so all of our partners have the binders in their office and then when they have a child that is diagnosed with a serious condition, they hand them this binder and it helps them organize their child’s healthcare, it gives them a list of things they need to do right now,” she said, noting it explains matters like obtaining a case manager and setting up a medical intervention plan with the school counselor. “Just everything that I wish somebody would have told me when she was first diagnosed.”
Mikels said they are always seeking more medical practice partners for this aspect of their outreach.
In addition, they need volunteers for their recently launched parent match program.
The program connects parents to work one-on-one with other parents who have been down the same road and have been navigating the system for some time.
Mikels said they also work with local charities that provide other services but don’t necessarily work with insurance concerns.
She said they help fill in those gaps. “We are here to help,” she said. “We charge no fees to any of our families for any services that we provide.”
Mikels said Celia is very supportive of the organization and her mother’s work.
“She thinks it’s awesome. I love her attitude,” she said, noting she was eager to change to the tagline, which originally said Navigating life with a critically ill child.
Instead she urged her mom to add chronically ill into the line, because that’s how she views her own condition.
“I love that about her,” Mikels said, noting the addition to the motto was an important move.
“The issues are across the board. Whether your child has autism or whether it’s a life threatening medical condition, it’s the same issues for insurance and school,” she said, noting help for chronically ill children is just as necessary as it is for those who are critically ill. “There are not a lot of resources.”
For more information, visit criticallyloved.org, email firstname.lastname@example.org.
Article in Southeast Outlook
Tyia Lynn Mikels knows hospital world.
That wasn’t in her plan, but it became a reality in 2000 when she and her husband David welcomed their baby girl, Celia, who is believed to be only one of six people in the world with a rare genetic condition that causes enlarged blood vessels in her intestines to rupture. It is so rare that it has no name.
Much of her childhood was spent in and out of the hospital. In fact, there rarely has been a week in the past 16 years that they were not at the hospital for some sort of treatment or checkup. In the past two years alone, she has required 43 units of blood, and has had many iron infusions, blood-clotting treatments and surgeries.
The Mikelses, who are members of Southeast Christian Church, have learned a lot in that time.
They know the challenges of navigating life with a critically ill child. They understand how it feels to deal with endless doctor appointments, hospital stays, insurance claims. They have become adept at managing Celia’s schoolwork while trying to keep up at work.
Hoping to give other families vital tools in dealing with chronic illness, Tyia Lynn recently created a free website, CriticallyLoved.net, that includes tips on setting up a medical binder to keep health information organized, instructions on how to set up a medical intervention plan at school, how to fight insurance denials, how to make hospital stays easier, information on cost share programs offered by pharmaceutical companies and financial aid available for medical bills.
Knowing the financial burden on families dealing with chronic illness, Tyia Lynn designed Critically Loved to be a free resource for families.
At hospital visits, Tyia Lynn can be found carrying a 6-inch-thick binder containing test results, medication and treatment lists and more. It is an invaluable resource for all who care for Celia.
Tyia Lynn hopes her website will help the families of some of the millions of chronically ill children in America. The site also includes a message board where other families can ask questions or share experiences.
“Navigating and managing insurance, paperwork and hospital stays is a full-time job,” Tyia Lynn said. “We’ve met so many families over the years who find it hard to navigate the system, which has become even harder in the last few years.”
Celia, a student at Cornerstone Christian Academy in Shelbyville, also contributes ideas to the website.
“I would like to see Critically Loved grow into a large resource so that more and more parents will use it and benefit from its practical support,” Celia said.
Interview with the Community Foundation of Louisville
Citizens Union Bank in Shelbyville volunteers to assemble binders for Critically Loved
We are in this together
“Love always protects, always trusts, always hopes, always perseveres.”
1 Corinthians 13:7