Hearts for Evelyn

08/21/2026

School is only a little over two weeks away, and lately I've been grieving the reality that Evelyn won't be starting 1st grade with the rest of her classmates. 💔
I was at Walmart recently, walking the aisles and seeing all the parents with their school supply lists in their hands. They were stressed about which markers to buy, what color folders they needed, and checking things off their lists.

And I remember thinking, I wish that was me. I wish I was stressed school shopping for my daughter.

Then I realized something...

There is absolutely nothing stopping me from school shopping for my baby girl. ❤️ She deserves that experience just as much as she would if she were walking into a classroom on the first day of school.

So today, we went school shopping. Well... sort of. 😊
Evelyn helped me pick everything out through video chat. She picked out her folders, notebooks, her favorite pens, and an organizer. She was so excited about every little thing.

Then she asked me if she could get a backpack. Realistically, she doesn't need one. She's not going to be carrying it into school every morning.

But you know what?
I'm not going to take that experience away from her. So she picked out her very own school backpack. 🎒
Because even though her first grade experience is going to look different than we imagined, she's still a first grader.

She's still a little girl who deserves to get excited about new school supplies, pick out her favorite colors, and have a backpack that makes her smile.

Her childhood doesn't stop because our life looks different right now.
And maybe that's something I'm learning through all of this...
I can't give Evelyn the normal school year I wish she could have. I can't change where she is or how long she's been in the hospital.

But I can find the little pieces of normal.I can give her the experiences I can.I can let her be excited about a backpack.

And today, seeing her face light up while she picked out her school supplies through a video chat reminded me that sometimes, we don't have to wait for life to become normal to make beautiful memories.
We just have to find a different way to make them. ❤️🎒📚

My sweet girl may not be starting 1st grade the way we imagined, but she's still going to have a first day of school feeling.

And I'll make sure she knows just how proud I am of her. ❤️

08/20/2026

We've been staying busy with Evelyn lately. ❤️

Over the weekend, Evelyn got a surprise visit from her cousins, and they played together for literal hours. Seeing her laugh, play, and just be a kid with them was something we didn't take for granted for a second.

She also got to do some face painting with Dad, and clearly, they both had a pretty great time with that one. 😂🎨
And in true Evelyn fashion, she has decided she might have a career in medicine someday. 😂🩺 She got her very own doctor's white coat, stethoscope, and Mayo badge, and she was absolutely thrilled about it. Watching her proudly walk around in her little white coat was pretty adorable. ❤️

Evelyn also had a play date with her friend Claire. These two have bonded since we transferred down to Mayo Clinic, and it's been so special watching their friendship grow.

Overall, things have been going well for Evelyn, and we are incredibly grateful. After spending so much time living in the hospital and waiting for the next big thing to happen, we've learned to appreciate the quiet days, the calm, uneventful days where nothing goes wrong and Evelyn gets to simply be a kid.

We're soaking up all the laughs, every play date, every messy face-painting session, and every moment of normal we can get.

08/13/2026

There have been some BIG updates with Evelyn’s transplant journey, so I wanted to try to explain where we are right now in a way that makes sense. ❤️
Evelyn’s antibodies are still high at around 30%. In simple terms, this means that, based on her current antibody profile, roughly 70% of donor hearts may be potential matches, while the other 30% carry proteins (HLA antigens) that her immune system may recognize and attack.
The good news is that the antibody numbers themselves are slowly coming down. Right now, some of the antibodies are around 13,000. Her team considers an HLA antibody level below about 8,000 much safer. Once they get below that threshold, the team may be willing to consider a heart carrying those particular antigens.

Right now, accepting a heart with those stronger antibodies would carry too much risk of immediate rejection. So even though Evelyn is listed at the highest priority, we can't simply accept the next heart that becomes available. It has to be a heart that her body has a reasonable chance of accepting.
Recently, Evelyn has actually come up on the "lists" for multiple donor offers, and she's been very high on those lists. She just hasn't been number one yet, or the available heart hasn't been one that she can safely accept.

We were also told something today that really put her situation into perspective: Evelyn is currently the only child in our region with her blood type who is waiting for a heart at Status 1A, the highest pediatric transplant priority.

And then today, her cardiology team asked us about something called DCD — donation after circulatory death.
Normally, when someone becomes an organ donor, donation occurs after brain death. With DCD, donation can happen after a person's heart and circulation have stopped and the medical team determines that death has occurred. Adding DCD donors to Evelyn's options could significantly increase the pool of hearts she can potentially receive.

But there is a difficult part.

With DCD, there is a possibility that the team could take Evelyn into the operating room, prepare everything, and ultimately determine that the donor heart isn't suitable for transplant. That's called a "dry run." We were told the chance of a dry run is roughly 50/50. Imagine waiting nearly a year for your child's heart, finally getting the call, rushing into surgery believing this could be the moment you've been praying for… and then having to walk back out without a heart.

That possibility is terrifying.
But after talking through everything with Evelyn's team, we decided to add her to the DCD donor pool. We're doing this because we want to give Evelyn more opportunities to find a heart that is safe for her.

The longer she waits, the more important it becomes to open every door we safely can. So right now, we're watching those antibody numbers come down. We're hoping they continue dropping toward that 8,000 threshold. We're watching every donor offer. We're hoping one of those offers eventually becomes the one. And now, we've added DCD to the possibilities in hopes that it can shorten this incredibly long wait.

There is still so much uncertainty.
But for the first time in a while, it feels like we're finding ways to expand Evelyn's chances instead of just waiting for the perfect heart to appear.
So please keep our girl in your thoughts. Keep hoping with us.

We don't need just a heart.

We need the one her body can safely accept and the one that can finally bring her home. ❤️

08/12/2026

✨ Today, Evelyn got to be part of a little bit of magic. ✨🪄

Evelyn joined in on the magic show in the atrium today, and she actually raised her hand to volunteer to be part of the show! 🥹❤️

If you know Evelyn, you know she is STRANGER DANGER to the extreme. 😂 She is incredibly shy, often gives people the cold shoulder, and usually wants absolutely nothing to do with being the center of attention. So watching her raise her hand and willingly volunteer to be up there was HUGE. 🥹

She is slowly coming out of her shell, finding her confidence, and becoming more comfortable putting herself out there and I couldn't be more proud of her. ❤️

Today, she was just Evelyn. A shy little girl who decided to be brave, raise her hand, and be part of the magic. ✨
And watching her grow, even in the middle of everything she is going through, is one of the greatest gifts.
Keep growing, baby girl. Mama is so incredibly proud of you. ❤️🥹

08/07/2026

After being stuck inside for two weeks, yesterday we finally got to go outside and it was so good for the soul. 🌞💗

Evelyn had her breakfast outside and soaked up the sunshine. We played some volleyball with her nurse and perfusionist, made giant bubbles with her new bubble toy, and just enjoyed being outside together. The little things feel so incredibly big after spending so much time within four hospital walls.

Today, we got to go outside again for an ice cream social and listened to music. 🍦🎶 And when we came back to her room, Evelyn decided it was time to play “surgery.” 😂

Of course, I was the patient, and she was the surgeon. She put me to sleep, gave me IVs, made her “incisions,” fixed me up, and finished everything off with a bandaid. 🩹

After everything this little girl has endured, watching her laugh, play, soak up the sunshine, eat ice cream and just be a kid is something I will never take for granted.
These are the moments we hold onto. 🌞🫧🍦💗

08/05/2026

I'm having a VIRTUAL Pampered Chef Pop Up and would love for you to join the fun!

* The Pop Up is all ONLINE!
* You can visit the pop-up whenever it fits with your schedule.
* BONUS - the first 25 to join (with their phone number) will get their name into a sweet Pampered Chef product drawing ($25 value) + when you take the quiz you'll earn $5 off your 1st order.

Whether you love cooking, tolerate it, or just want to get in and out of the kitchen as soon as possible, this pop-up has something for YOU!

The best part? 30% of every purchase will be donated to COTA for Evelyn's Heart to help with transplant-related expenses.

Thank you so much for standing with Evelyn and our family. Every order truly makes a difference!

Join the party here:

Table By Pampered Chef

08/05/2026

https://www.gofundme.com/f/support-for-family-of-jackie-bray?attribution_id=sl%3A832c1a17-3b1f-4e15-a686-4a57f50e7e0c&ts=1785615223906&utm_campaign=natman_sharesheet_dash&utm_medium=customer&utm_source=facebook&fbclid=IwVERDUATggK1wZG9mBWV4dG4DYWVtAjEwAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHv0vHqJinm3CEXEDUnZAI8E8Wuu_gSNt4gUNj5ReIFZanxPOyfYd5tN6Rlu2_aem_bQTKIfIaz3AfDIyB_pSTOA

Today, a family is experiencing every parent's worst nightmare. In the midst of unimaginable grief, they made the incredibly selfless decision to give the gift of life through organ donation.
Please keep Jackie's family in your thoughts and prayers as they navigate this heartbreaking loss. If you're able, consider supporting them by donating or sharing their fundraiser. No family should have to carry this burden alone.

Organ donation is a profound act of love that has the power to save the lives of others while honoring the life of someone so deeply loved. Today, let's surround Jackie's family with compassion, support, and love ❤️

On the afternoon of Tuesday, July 28, Melissa and Nick Bray’s daughter, Jackie, was r… Morgan Bray needs your support for Support for Family of Jackie Bray

08/02/2026

Next month marks one year in the hospital. I still can't believe those words are real.

When Evelyn was listed for a heart transplant, we were told to expect a 6–12 month wait. Now, her cardiologists tells us that the latest data shows many Status 1A children around her size are waiting an average of 12–18 months.

Think about that.

That means more birthdays spent in a hospital room. More holidays connected to machines. More families living out of suitcases. More children depending on mechanical heart support just to survive long enough for a second chance.
This isn't because medicine isn't advancing. It's because our children are being left behind.

Congenital heart disease is the most common birth defect, yet it remains severely underfunded and under-researched. While new therapies and technologies continue to improve outcomes for adults with heart failure, progress for children moves at a painfully slower pace. Too many kids are left waiting not because they aren't sick enough, but because we haven't invested enough in pediatric heart research, innovation, and transplant care.

Our children deserve better.
They deserve more research. More funding. More clinical trials. More pediatric-specific treatments. More donor awareness. More urgency.

No child should have to spend a year or longer living in a hospital, relying on machines to keep them alive while waiting for a heart.

Please don't forget these heart warriors. Share their stories. Advocate for congenital heart disease research. Register as an organ donor if you're able. Speak up for the children who can't.

Because every child deserves the chance to grow up—not just the chance to keep waiting. ❤️

** edit**
Since some people misheard, or misinterpreted my status, I never want another child to die so mine can live. Every donor heart comes from another family's unimaginable loss, and that reality is heartbreaking.
My post wasn't about wishing for more donor hearts, it was about wishing we had better options. I want to see more funding for congenital heart disease research, pediatric heart failure treatments, stem cell research, tissue engineering, and technologies that could one day allow children to repair or even grow their own hearts. I want a future where children don't have to rely on another family's tragedy to survive.
No parent should have to pray for a miracle that begins with someone else's worst day. We need to invest in research so there are more lifesaving options for kids like Evelyn.

07/31/2026

This afternoon, Evelyn received one of the coolest gifts. ❤️

Using her most recent cardiac CT scan from 2024, they created a 3D-printed model of her actual heart. Holding it in our hands was such an incredible and emotional experience.

Her heart has likely changed quite a bit since then because of her dilated cardiomyopathy, so it's probably larger now, but it's still amazing to see what her heart looked like and to have such a unique keepsake of her journey. Medicine truly is incredible. 🫀