Remembering Remi and Her Quest to Find a Cure for Brain Cancer in Kentucky

It was an emotional hour when Hannah honored her daughter during the St. Jude Radiothon. Remi Faye McDaniel, who bravely fought an incurable brain tumor for 16 months, passed away on December 7th, 2023 at 7. Her strong faith and strength during her battle with Diffuse Intrinsic Pontine Glioma (DIPG) was an inspiration to all who followed her journey. A journey that continues today and long into the future.

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Remi was a special little girl. She had a gift for making people smile, laugh, and enjoy life. Even at her sickest, she would always put others first. Her faith never wavered as she appreciated the love that surrounded her until she passed away peacefully in her home surrounded by family. She knew of the love to come when Memaw would be waiting with open arms to bring her home. Although Remi is no longer with us, her legacy will live on through those who love her the most.

WHAT IS DIFFUSE INTRINSIC PONTINE GLIOMA?

On August 17th, 2022, 6-year-old Remi was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG). It wasn't good news. There are approximately 300 children diagnosed each year. It's a brain tumor that is very aggressive and difficult to treat. At this time, there's no cure, and the survival diagnosis is typically less than a year. It's the most terrifying diagnosis a family can hear. Remi would be in the fight of her young life.

St. Jude's Brain Tumor Team is working on a miracle to treat and cure DIPG. If anyone can do it, they can. They have one of the largest pediatric brain tumor programs in the country. Scientists are working around the clock conducting trial studies, researching protocols, and desperately looking for answers. God willing, they find them. You can find out more by clicking the button below.

REMEMBERING REMI DURING THE ST. JUDE RADIOTHON

Leading up to the radiothon, Hannah was nervous. Her world came crashing down at 9:15 pm on December 7th, when her little girl gained total healing. Following her journey since that devastating day, emotions have been up and down, as to be expected. I've admired Hannah's strength and resilience over the last several months. The pain would be unimaginable.

"She definitely took a piece of my heart when she left. It's a strange feeling. Please continue to say her name around me. Talk about her often. She was my entire world. Just know that she made it where she was going, and she is happy and complete again.", Hannah shared on December 10th

Since that early post, Hannah has continued inspiring everyone. Including me. Today the inspiration continued as we talked about Remi and got the "phones ringing for Remi" during the St. Jude Radiothon. They never stopped ringing the entire hour. There were over 70 people who became partners-in-hope in Remi's name. It was beautiful.

 REMI'S LEGACY LIVES ON

Hannah is carrying out Remi's legacy every single waking moment. For Remi's Celebration of Life, she held a toy drive for Christmas Wish. It was a HUGE success. Remi loved to give gifts so it was a perfect way to honor her. Hannah is also advocating for the DIPG community in many different ways. She won't stop until there is a cure for childhood cancer.

"2024 will be the year of change and the start of building Remi's legacy. People will know about DIPG and they will remember her name. She will continue to help kids in her afterlife, so no one is alone. My girl will be there for your babies so don't fear the unknown. I will continue her work on Earth to stop DIPG and spread her cheer that this world desperately needs. I pray we get closer to the cure so other families don't experience this pain. Big plans are in motion."

Before Remi passed away, she talked to her mom and doctors about donating her brain and spinal cord for research. That's exactly what the family did to fulfill her wishes. Throughout her illness, her goal was to try and save children. She always put everyone first. She was one amazing little girl and will never be forgotten.

BECOME A PARTNER-IN-HOPE

During the Window World St. Jude Radiothon, you can become a St. Jude Partner-in-Hope by calling 1-800-201-8883.  It's just $19 a month for 12 months on a credit or debit card.  You can also text HOPE to 626262.  Once you text WBKR to that number, you'll get a link to follow to make your donation and become a Partner-in-Hope.

All of our 2024 Partners will receive a 'This Shirt Saves Lives' t-shirt.

And, for the first time, our Partners will also receive a 'We Won't Stop' hoodie!

Hannah McDaniel joined us at the St. Jude Radiothon and shared how Remi is still inspiring.