In the News
Critically Loved is helping families with critically and chronically ill children
News coverage of Over the Edge 2023
WAVE 3 Country interviews Critically Loved and Down Syndrome of Louisville about their OVER the EDGE fundraising event
Article in towne Posts magazines
News coverage of Over the Edge 2022
Article in Courier Journal
Interview on Wave3
WAVE 3 Country interviews Critically Loved and Down Syndrome of Louisville about their OVER the EDGE fundraising event
Interview with Terry Minors
WHAS radio host Terry Meiners interviews Bellermine's Coach Davenport about going OVER the EDGE for Critically Loved!
Coach Davenport is rappelling 18 stories off the roof of the Hyatt Downtown Louisville in honor of their newest team member, Seth, a 7 year old cancer survivor!
Interview on WDrb
Stephan Johnson covers a story about our Special Needs Moms Night Out
Interview on Wave3
Dawne Gee interviews Critically Loved's Executive Director, TyiaLynn Scott.
A plea for our community to donate blood
Interview on WDRB
AIRED Nov 13, 2021
Dozens rappel down downtown Louisville building for 'Over the Edge' fundraiser
Interview on wave3
Dawne Gee interviews Critically Loved and Barren Heights about Over the Edge Fundraiser
Podcast interview with Hope Anew
Do you ever feel completely overwhelmed by the healthcare system? It can be very intimidating and scary as you learn to navigate the system. It doesn’t take long before you get an intense dread of opening the mailbox out of fear of what bill is going to arrive the next time you reach in there.
If any of the above resonates with you, then you won’t want to miss this interview with TyiaLnn Scott, Founder of Critically Loved. In this interview you will learn practical tactics for managing your child’s healthcare and potentially greatly reduce those bills that are coming in. You will also learn realistic ways to rejuvenate yourself so you will be a better caregiver for your child.
The vision of Critically Loved is “to positively impact the lives of families with chronically or critically ill children by assisting them in navigating hospital stays, bill payment, and schooling issues as well as providing educational, recreational, and spiritual support to foster community.”
Special needs moms night out
Spectrum News interview
Critically Loved: Non-profit supports families with chronically ill or special needs children
TyiaLynn Scott’s daughter was diagnosed with a blood condition when she was five years old.
Scott said the condition is so rare that there is no name for it. The chronic illness causes internal bleeding that has required numerous hospital visits, blood transfusions, and in-home blood clotting infusions since the diagnosis.
“Chaotic. Just trying to keep her alive and then trying to deal with denied medical claims and getting things approved out-of-network, it was very hectic. It was a lot of added stress,” is how Scott described the first decade post-diagnosis.
So, in 2015, Scott left a consulting career to try a new path, one she’d walked before. “After I wasn’t spinning just trying to learn everything, that’s when I was like, ‘Okay, we can help somebody else,’ ” Scott told Spectrum News.
What started as a blog to help parents practically manage their critically or chronically ill child’s healthcare is now a non-profit called Critically Loved. The organization now services parents with children who have any special need, from autism to Zollinger–Ellison syndrome.
Critically Loved supports parents practically, emotionally, and spiritually. For example, with the help of volunteers, Scott distributes medical binders that are given out at the onset of a child’s diagnosis by partner medical offices.
Taryn Abbott, a parent involved with Critically Loved whose nine-year-old son was diagnosed with Duchenne muscular dystrophy as a toddler, found the medical binder especially helpful.
“When you talk to eight different specialists over a course of a year, it’s easy to get all of that mixed up, and so she [Scott] gave us tools to just keep it organized,” Abbott said. However, Scott said the heartbeat of Critically Loved is its bible study, which supports parents both emotionally and spiritually. “There’s lost of tears in that class; there’s lots of healing in that class, too…It’s good support for all of us,” Scott said.
She emotionally added, “I’m still healing, and I’m still learning what that means to get support from other people.” Scott understands firsthand the high costs parents face to provide their child with the best services and healthcare so Critically Loved doesn’t charge a dime.
There are many other resources and services that Critically Loved offers, including an expansion of counseling services through a grant received in June 2019.
As the only paid employee, Scott said she can’t do all that she does without the support of volunteers and the non-profit’s partners.
Currently, the Critically Loved serves Louisville, Lexington, Cincinnati, and a few other surrounding areas, but it is expanding.
There is also a wealth of information for anyone peruse on the website.
Courier Journal article
USA TODAY Network program awards checks to 3 Louisville agencies
Three Louisville nonprofits were given checks earlier this week for a combined $25,000 in grants awarded by the USA TODAY Network’s A Community Thrives program.
A Community Thrives is a grant program from the USA TODAY Network, which includes the Courier Journal, and is part of the Gannett Foundation. The awards program recognizes organizations that are making a difference in their communities and has awarded more than $6.5 million since 2017.
The Gannett Foundation awarded $2,010,000 this year to 136 organizations in 92 cities around the country.
One of the recipients, the Jefferson Family Recovery Court project, received a check for $5,000 on Monday. Launched in January, the project has a goal of keeping families together during the process of a parent recovering from substance abuse.
WHAS11 article
LCFC to host blood drive at this weekend's match
The blood drive will be held in honor of Celia Mikels, 19, who is battling internal bleeding.
LOUISVILLE, Ky. — The Kentucky Blood Center and Critically Loved have partnered for a blood drive hosted by Louisville City FC.
The blood drive will be held in honor of Celia Mikels, 19, who is battling internal bleeding. Mikels has struggled with low blood levels since birth and has required blood transfusions since she was 5 years old.
Those who donate blood will receive a ticket to LCFC’s match on September 28. LCFC will also donate $4 per ticket to Critically Loved for those who purchase additional tickets to the match.
The blood drive is 3:30 p.m.-6:30 p.m. on September 28 at the Slugger Field Atrium.
Article in Courier Journal
Louisville group gives a shoulder for parents of ill kids to cry on and space to be angry
It took TyiaLynn Scott years to navigate her daughter’s life-threatening illness.
For so long, she didn’t know how to cope with life amid too many doctor’s appointments, medication and full-time medical care.
Scott’s daughter, Celia, 18, has an internal bleeding problem and needs to receive blood frequently to remain stable. From 2015 to 2018, she had to receive 50 units of blood.
Scott’s journey with her daughter led her to launch Critically Loved in 2015, a Louisville nonprofit that helps families who have children with critical illnesses or disabilities. In early June, it was one of three local nonprofits to receive grants through A Community Thrives, a grant program from the USA TODAY Network, which includes the Courier Journal, and is part of the Gannett Foundation.
Critically Loved offers a community and free resources for people who are angry, alone or just need a shoulder to cry on.
Sometimes that means group therapy or paying for a parent to see a professional counselor. Sometimes it means taking a mom out for a special evening away from the stresses that come with being the parent of a child who has an illness or a disability.
Sometimes, it just means letting parents know they’re appreciated.
It’s important to be flexible and provide families with whatever they need to cope, said Scott, who is the only paid staffer for the organization.
“A lot of parents are very angry about their child’s condition,” she added.
And a lot of them have never been in a room with people who understand their struggle.
In Critically Loved meetings, “all the parents understand the lingo.” Even if one has a child with autism and one has a child with cancer, they understand the language of navigating hospital bills, school accommodations and “off days.”
Scott, 43, works closely with families and teaches them how to negotiate with insurance companies over denied claims, to navigate financial aid and cost share programs that are available for medical bills and to get insurance approval for out-of-network facilities.
It doesn’t matter what issues the family is facing, Scott said. From autism to cancer, “The issues you’re dealing with are the same.”
Her organization deals with people facing all sorts of developmental, behavioral and physical conditions.
The Critically Loved blog
Scott keeps a Critically Loved blog, too. It’s just another place she goes to pour her heart out.
She writes about time — how 24 hours move slower when you watch your child suffer.
How it’s OK to not have it all together.
How every parent of a child with an illness or disability is “in this together,” as she always signs her posts. It’s a raw thing, her blog. She always writes it from her daughter’s hospital room, in the midst of her most broken and vulnerable moments.
She does it that way because she wants the parents she works with to see, and not just hear, that she’s with them. “It’s good for me to let my walls down so other parents can see,” she said.
She never wants to pour from an empty cup. She said she manages to minister to so many people because “I have a great support system and I take breaks.”
Hospital bags for parents
Anyone who’s spent a night in a hospital room with a friend or loved one knows that it’s uncomfortable. For parents who often end up staying overnight with their child for extended periods, it can become a nightmare. Scott wants to change that.
She brings tote bags to parents staying with their hospitalized child. In the bags are comfort items – toilet paper, crackers, small packs of raisins, a memory foam pad to put on their hospital beds and a special binder with information on how to navigate finances and networking when your child is seriously ill.
In the binder is “all the things I wish people would have told me,” Scott said.
There aren’t enough organizations focused on specific disabilities and illnesses, Scott said, and it makes the families of children with rare conditions feel even more ostracized.
To meet this need, Critically Loved reaches beyond its own perimeters and works with 45 local nonprofit partners to make sure that if a parent needs a service it can’t offer, it can connect them with someone who can help.
In 2018, Critically Loved reached around 500 families. That was thanks in part to all its community partners, such as Families for Effective Autism Treatment of Louisville.
Community nonprofit partners, social workers and pediatric partners all help Critically Loved by passing out its binders to parents. In 2018, they passed out 311 binders. Scott said 2019 is on track to meet that number.
Volunteering with Critically Loved
Scott is always looking for volunteers to help with the organization. In 2018, the group had several hundred volunteers working to help assemble hospital bags, assemble the information binders and help with the group meetings.
“It’s great for community awareness,” she said, and “getting the word out to let families know we exist so we can service them.”
People who want to volunteer can reach out to Scott through her website’s volunteer portal.
A Community Thrives grant
In June 2019, Critically Loved was one of three nonprofits in Louisville that were awarded grants through A Community Thrives.
It received $10,000 that will help it provide better counseling services for families.
Other grants it’s received in the past have helped the organization pay for professional counseling for children, which organizers hope to expand and offer to the whole family.
Scott said the groups are therapeutic, but sometimes they’re not enough to help get parents off a plateau of anger. She remembers working with a parent who couldn’t get past feelings of bitterness over a child’s condition.
Then, Critically Loved sent that person to professional counseling. The parent came out of that a different person and is now involved with the organization.
Scott advocates for professional counseling, whether it’s helping children cope with their own illnesses or helping the parents get to marriage counseling to work through anger.
“My daughter — her condition’s life-threatening,” Scott said. “She knows any time that she could have internal bleeding that could end her life. If she didn’t have a therapist to help her work through that, I don’t know what we would do.”
She wants to fund those services, provide them to as many family members as possible and make sure that families have proper access to professionals who can help them cope.
Meanwhile, she’ll be trekking up and down hospital halls, tote bag in hand, to offer an understanding smile to vulnerable parents peeking out from familiar hospital rooms.
Reach Sarah Ladd at 502-582-4078 or sladd@courier-journal.com. Follow her on Twitter at @ladd_sarah. Support strong local journalism by subscribing today: courier-journal.com/subscribe.
WHAS 11 News
Special Needs Mom's Night Out
Interview with WHAS 11 News
Radio interview with executive director, TyiaLynn and her daughter Celia
Listen to the recording
Interview with teresa morgan
Article in the southeast outlook
Parents of Chronically ill group launches March 15
TyiaLynn Mikels’ daughter, Celia Faith, battles a genetic, gastrointestinal condition so rare it doesn’t have a name.
Celia, now 17, practically grew up in hospital rooms, and the Mikelses became well-versed in maintaining Celia’s health information and managing all the logistical and financial concerns that accompany years of extended hospital stays, intensive medical testing and procedures, missed school and work days and insurance claims.
They also became well-versed in the mental and emotional anguish that accompanies a life in and out of hospitals.
“I’ve dealt with a lot of anger in the last 17 years,” said Mikels, who is a member of Southeast Christian Church. “I kept asking why God would allow this to happen to my child. For years, I wrestled with my anger at God and saw my anger beginning to pour out onto others.”
To cope with the emotions of raising a child in the hospital, TyiaLynn chose to write.
For years, she worked on a Bible study for parents in similar situations, but when she would sit down to write, the pain, anger and confusion of her situation would bubble to the surface.
“During the writing, editing and publishing processes, I had to read and reread the study,” Mikels said. “Each time, I would have to relive moments where I was scared, angry or helpless. It was almost therapeutic for me to come face-to-face with those emotions. I started to see God working in places where I blamed God for the suffering my daughter and I were going through.”
Mikels finished the study and will use it to help facilitate the new Parents of the Chronically and Critically Ill Support Group, which will meet at Southeast’s Blankenbaker Campus Thursdays at 7:30 p.m. beginning March 15.
The group is open to any parent whose child suffers from a chronic illness, from mild autism to life-threatening cancer.
“Though the child’s suffering is different, the emotions parents feel are the same,” Mikels said. “We all experience anger, guilt, shame, confusion and heartbreak. God is able to do amazing things when we invite others in and work on the hard topics together.”
Mikels will co-lead the group with Southeast member Diane Tripp, who served as a missionary with her husband, Mike, for 25 years. The couple has two adopted daughters with special needs.
Mikels said that her hope is that the group can be a safe place for parents to work through the ongoing emotions of life with a chronically ill child together, build a healthy support community with one another and eventually take what they have learned in the group and use it to help other families in similar situations.
Mikels also hopes the group can be a connecting point for parents who want to learn more about ministries and resources available, like CriticallyLoved.org, a website she launched in 2016 to provide practical resources to parents whose children suffer with chronic illnesses.
“There weren’t many resources available to families with children with rare conditions like Celia,” Mikels said. “I wanted to create something that would be a great resource to all people, and eventually felt God’s leading to see this as a ministry opportunity.”
What began as an online resource grew into a nonprofit organization.
Now, Critically Loved exists to stand in the gap for parents who find themselves without a plan for their chronically ill child.
Critically Loved partners with pediatrician offices, specialized charities and children’s hospitals to distribute a “Getting Started” binder at the onset of a child’s diagnosis. The binder helps parents organize their child’s medical information and any subsequent forms they may need.
The organization also has a Parent Match program, which provides mentoring for parents seeking spiritual and emotional support.
“My greatest hope is that parents will see beauty in the ashes of their situation and ultimately be pointed to Christ,” Mikels said.
Parents of the Chronically and Critically Ill will meet Thursdays beginning March 15 from 7:15 to 8:30 p.m. in ED 250 at the Blankenbaker Campus. The group will meet after Encounter Worship, a service held weekly by Southeast’s Support and Recovery Ministry.
The Bible study book, “Critically Loved,” is available for purchase in The Living Word bookstore.
For more information, email care@secc.org.
Article in OLDHAM ERA NEWSPAPER
Students volunteer with Critically Loved on Valentine’s Day
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
Sharing the love
TyiaLynn Mikels has started a non-profit to guide other parents raising seriously ill children.
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 tyialynn@criticallyloved.og.
Article in Southeast Outlook
New website helps families navigate life with a critically ill child
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.
Citizens Union Bank in Shelbyville volunteers to assemble binders for Critically Loved
Our mission
“Critically Loved exists to provide guidance and hope for families of chronically or critically ill children.”
We are in this together
Much Love
“Love always protects, always trusts, always hopes, always perseveres.”
1 Corinthians 13:7