Emelia Calmes-Everly’s Battle Against Fanconi Anemia

07/24/2025

This is an awesome article about the advancements that are being made for other children with Fanconi Anemia. Dr Agarwal is Emelia’s transplant doctor and she was deeply involved in this project. Thank God for their work and their amazing brains.

https://medicalxpress.com/news/2025-07-stem-cell-transplant-toxic-successfully.html?fbclid=IwQ0xDSwLuiENleHRuA2FlbQIxMQABHrdoIbiofezNWcThWInVHauUJxjB1R5gWlqhyrK30fwKfbMilI9cnWqcR0Vr_aem_PhHI8nyLkYVWIMatbRuydQ

An antibody treatment developed at Stanford Medicine successfully prepared patients for stem cell transplants without toxic busulfan chemotherapy or radiation, a Phase I clinical trial has shown.

05/07/2025

JohnMarc is vowing to donate 20% of his tattoo profits and 100% of his tips to the Fanconi Cancer Foundation during the month of May. Check out the deals going on at Big Top Tattoos if you would like to get a tattoo to support the cause. They are also doing a large change jug. If you have and change or small bills you would like to bring by the studio to fill the jug, please do so! Let’s turn coins into cures!!

05/01/2025

We still have some prints of this amazing painting done by Emelia. Canvas and paper prints. Available at Big Top in Peoria for pick up or can be delivered for a fee. All of the profits will go to the foundation

The original painting is still available to the highest bidder. Silent auction style- private message us with your bid. Starting bid $150.

8x10 photo paper prints-$5
8x10 canvas prints- $10
12x16 canvas prints-$25
16x20 canvas prints- $50

Limited quantities available.

05/01/2025

Here is a link if you would like to donate directly to the campaign for the Fanconi Cancer Foundation. Please be generous if you can. This foundation has helped so much in the last 40 years. When it was created, children were lucky to make it to 20 with this disease. Now, because of their amazing work, people are living into their 40s & 50s with this disease.

Fighting Fanconi Anemia as Family and Friends 

05/01/2025

Things are going well for Emelia. She was recently given medical clearance to go out and enjoy life a lot more. She will still have to be careful of certain viral infections but overall she is in great shape.

May is Fanconi Anemia Awareness Month. We will be doing some fundraising for the Fanconi Cancer Foundation. I will post a link today and will also have some other ways you can help to raise funds for this amazing foundation.

Much love from all of us.

03/01/2025

Today marks 1 year since Emelia was given a 2nd chance at life, thanks to the wonderful people at Lucille Packard Stanford Children’s Hospital, Nikola James Everly- her then 8 year old little brother/ savior sibling who graciously donated his bone marrow to save his big sisters life, the wonderful people at Ronald McDonald House Charity in Palo Alto CA, the Doctors Nurses and staff at Peoria St Jude, grandpa Paul Everly for being the second person as caregiver and support for Emelia and Nikola during this process, JohnMarc Everly (daddy) for making sure everything was done according to plan, Tyne (mama) for keeping the family together during this rough time, and every single person who was supportive from a distance and in regular contact through that tough time.

It’s been 1 whole year and it seems like it took forever to hit this landmark. Thank you to everyone for your prayers, love, kindness, support, and encouragement through all this craziness Emelia and her family has endured.

We know it’s hard to mention every single person. You know who you are that was there through it all. We love every single one of you for all you have done for Emelia during this process.

Also, Today is Rare Disease Day, so how crazy is that? It was meant to be.

02/15/2025

Yesterday, Miss Emelia (looking cute in her Valentine’s Day outfit) went in for a clinic visit. They have her some pretty good news.

They did a Lymphocyte/ Mitogens quantification study to see what her T and B cells and NK cells are doing. Her Tcell growth is very close to being in normal range, B cells are super high so growing amazingly, and NK are very high as well. This means she is almost back to full immune maturity.

She no longer has to take any additional medications and has been cleared for small activities with some minor restrictions. She still can’t go back to school in a classroom setting yet, but soon.

They also gave her 4 immunizations to start the process of getting her back to being fully vaccinated again.

We are so close to getting back to normal life.

12/14/2024

Been a while since we've posted on here. Emelia is doing well. She is slowly working towards full immunity. Her T cells are still a bit low. The projection is to allow her to return to school in person after the holiday break, but we are still waiting for medical clearance for that to happen. As of now, just keeping her healthy and away from any virus infections is our main focus.

Here is a bit of information about the potential effects of this disease. It's going to be a lifelong struggle with issues arising at any time.

🔬 How does affect the body? This diagram shows the many ways FA impacts different systems — from bone marrow failure to increased cancer risks.

Thanks to research, we’re learning more and more about how to take on FA. Your support is crucial in continuing this life-saving work!

09/19/2024

It’s been exactly one year since Emelia was officially diagnosed with Fanconi Anemia. What a long strange trip it’s been!

08/29/2024

🏃‍♀️‍➡️ Get out, get active, and help us push research forward! 🏁

The way forward for those with Fanconi anemia and associated cancers is through the funding of crucial research to improve outcomes and quality of life.

By choosing your challenge this September, you can help us do just that!

Join the challenge: https://fundraise.fanconi.org/endure

We are always here to help, don’t hesitate to reach out!

08/29/2024

This is one of the worst parts of this disease. People with it can have so many complications with health issues that it takes them at such a young age. Awareness and support for this foundation is vital to overcoming the problems that arise from Fanconi Anemia.

Our community has experienced many painful losses, and yesterday, we said goodbye to yet another remarkable person, Jack Timperley.

As the 2019 Winn Byrd Award recipient, a dedicated member of the FAdult Council, and an advocate for bone marrow donation and education—fondly known as “Captain Marrow”—Jack was a true superhero in the FA community. His voice, spirit, and advocacy will never be forgotten.

In honor of our friend, we invite you to reflect on his inspiring story shared at the 2019 FA Scientific Symposium: https://youtu.be/nFm7bMFbKPI?si=U2Q_4Wzq0pPe3X74&t=141

Facing a rare disease like Fanconi anemia together makes every loss deeply felt. At FCF, we are dedicated to supporting those navigating the most difficult moments.

If you or someone you know needs support, please consider joining our "In This Together" bereavement support group: https://fanconi.org/grief-support/ 💙 We hope this can be a valuable resource as our community navigates through loss together.