It took the life of Astronaut Neil Armstrong's little girl in 1962, and very little progress has been made in defeating a deadly form of childhood cancer.
Now, Mississippi's Governor has joined a number of other states in the US and declared May 17 DIPG Awareness Day.
It's an effort that will hopefully lead to more research into the cancer formally known as diffuse intrinsic pontine glioma.
The rare disease has been brought to light most recently in with three diagnoses in Ocean Springs; Jaxon Schoenberger, Sofia Mohler, and Sophia Myers.
Sadly, Jaxon and Sofia lost their battle with the disease within a year. Now, Sophia's parents are praying for a miracle after she was diagnosed in February.
The 7 year old was a seemingly healthy and active first grader at Oak Park Elementary. Her favorite activities included dancing, playing soccer, and spending time with family and friends.
But, her picture perfect life took a tragic turn when what her parents initially thought was the flu turned out to be an inoperable brain tumor.
"Upon diagnosis they tell you that even with radiation the average child lives only 9 to 12 months," said Sophia's mother, Angel. "We are praying for a miracle."
Praying for a miracle because that's what even the best doctors in the country told she and her husband it would take to save little Sophia. DIPG attacks about 200 to 400 children in the United States each year.
Angel says it's something no parent expects to happen to their child.
"I never thought it would be me. Never thought it would be my child," she said.
There is no cure for DIPG, and children generally live less than a year after diagnosis. Angel and Josh are devastated beyond comprehension.
"She gets sick like this and it's like why my child," Josh said tearfully. "You want to pick her up and carry her to safety and you can't do it."
But, they are doing everything they can to save her. Sophia is part of a clinical trial at Emory and Children's Healthcare of Atlanta. She has had radiation, is taking an experimental drug, and has recently had a shunt surgically placed in her head for drainage.
She is also on steroids that have caused physical and emotional changes that her parents say are almost harder for Sophia to deal with than the illness.
"She says, 'I'm scared daddy. Help,' and you don't know the right answer. We love on her and kiss her every second we can because you don't know if it might be the last," said Josh.
Beyond the ever present pain, the Myers are frustrated by the limited amount of money they say is spent for research to fight childhood cancers; specially the very rare ones like DIPG.
Angel noted, "These are our children and if they're not worth it, then there is no other cause that is. Not one."
As they fight to raise awareness and try to save their daughter, the Myers are amazed and grateful for the outpouring of community support; friends and strangers alike. Angel says they continue to be inspired by little Sophia's courage.
Sophia continues to suffer with severe headaches and nausea. Her parents hope she will be well enough to travel to Las Vegas to see a Britney Spears concert. It's one of her wishes, and the "Do It For Love Foundation" arranged for the tickets and a meet and greet.
If you would like to learn more about how you can help Sophia and her family, please go to her Facebook page, 'Love for Sophia'. Donations are also being accepted at Community Bank branches in the Sophia Myers Benefit Fund.
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