Our 2023 Ambassador

About ESTHER

Esther went to heaven on February 12, 2023 after battling a rare brain tumor called Diffuse intrinsic pontine glioma or DIPG. Here are a few of her favorite things:

  • Bible Stories - Christmas and Noah's Ark (rainbows)

  • Color - Pink, Purple, Tinkerbell-Green

  • Fruits - raspberries and strawberries

  • Vegetables - cucumbers and green beans

  • Toy - dolls (all kinds!)

  • Hobbies - drawing and painting

  • Symbol - rainbow, cross

  • Mythical Creatures - mermaids and unicorns

  • Characters - Frozen's Elsa, Moana, Tinker Bell

  • Animals - Kittens and Ladybugs

ESTHER’s Story

On April 23, 2022, Esther’s parents noticed her left eye turning inwards, similar to her older sister Evelyn. They visited with Evelyn’s pediatric ophthamologist, Dr. Sebastian Troia on May 2, when they learned that Esther’s vision was normal but there was an issue with her sixth cranial nerve that caused the left eye to turn inward. At the insistence of Dr. Troia and another doctor who examined Esther, Julie and Jim took Esther to Children’s Hospital for an MRI. The MRI revealed a mass at the base of Esther’s head and they preliminarily diagnosed Esther with Diffuse Intrinsic Pontine Glioma or DIPG. The following day, the neuro-oncologist team at Children’s Hospital agreed with the diagnosis of DIPG and offered a couple options of treatment. A few days later, Esther was accepted to St Jude’s Research Hospital in Memphis, Tennessee.

ESTHER’S Parents

Esther's first miracle is that she was born Monday, October 24, 2016 at 8:08am weighing 7 lbs. 14 oz. Mommy and Daddy were told at 6 weeks into her pregnancy to prepare for a miscarriage - the amniotic sac was empty and the pregnancy was not viable. She is now a sweet and sassy 5-year old little girl, who loves all things pink, princess, and Jesus!

Daddy calls Esther his little "Boo" because she can be so sneaky and quick, which makes her very good at playing hide-and-seek! Daddy also has special names for her like "Boo-ana" (after Moana) and Queen Elsa (after Frozen's main character). Esther also loves Tinker Bell so Daddy calls her Stinker Boo, too! (Sometimes she can be quite a little stinker!

Mommy loves her little Ladybug. Esther is the baby girl of the family after all - Mommy's little lady, ladybug. Esther loves to play tricks on Mommy, and also loves to do Mommy's hair, nails, and celebrate Mother's Day everyday by helping Mommy to "relax." Even though Esther can be sassy and loves to prank people, she is very servant-hearted and tells people she loves Jesus. Esther has a compassionate heart and is sensitive to other people's needs.

ESTHER’s Journey

Esther underwent treatment at St Jude’s hospital from May 8 until July 8. While on a family vacation to Disney World in Orlando, Florida, for Esther’s Make-A-Wish dream to see the princesses in August, the family was notified that Esther had been invited to start preliminary tests for the Sonalasense clinical trial. At first Esther had too much inflammation in her brain to start the trial, but after her MRI on the August 24th at St Jude’s Hospital, the inflammation had gone down and Esther was able to start the trial in Washington D.C. She did two treatments, the first on the right half of her brain and the second on the left half. After both treatments and some time her follow-up MRI in November indicated the tumor had decreased by 17%. Another follow-up MRI in December revealed the tumor had decreased by 42% since Esther’s original diagnosis. However, in January 2023 Esther’s MRI showed multiple smaller tumors and metastasis in her brain and spinal cord. On February 11, Jim and Julie took their youngest daughter to the Emergency Room for extensive seizures. With the support of the Children’s Hospital and hospice care, Esther’s parents were able to take Esther home to her family.

On February 12, 2023, Esther made her journey to heaven while cradled in her mother’s arms and surrounded with the love of her family.

 

Their Gratitude

Jim and Julie are forever grateful for their time with Esther, their miracle girl. They intend to carry on Esther’s legacy and continue to fight for children with DIPG.