DIPG

A close-knit community wrapped its arms around the Myers family when they needed it most

Oak Park Elementary School students hold a banner for Sophia Myers signed by students at the Ocean Springs school in April. Myers was a first-grader at the school when she was diagnosed in February with DIPG. The school and community have rallied behind the 7-year-old, offering support and holding numerous fundraisers for medical bills.
Oak Park Elementary School students hold a banner for Sophia Myers signed by students at the Ocean Springs school in April. Myers was a first-grader at the school when she was diagnosed in February with DIPG. The school and community have rallied behind the 7-year-old, offering support and holding numerous fundraisers for medical bills. amccoy@sunherald.com

The pillow Sophia Myers carries with her wherever she goes is colorfully etched with messages from friends offering hope and encouragement to the 7-year-old who is suffering with a deadly brain tumor.

“Love you, Sophia,” one friend writes, “Feel better soon sweet girl.”

Another says, “I miss you Sophia,” and another tells her, “You are so amazing, Sophia.”

Her friends — too young to understand the gravity of their little friend’s battle with a rare cancer that kills in a matter of months, not years — tell her they look forward to the day they can reunite again.

Their gestures, cards and gifts bring smiles to Sophia’s face in between her cries for comfort from the pain her body endures.

Since her diagnosis, love and prayers have surrounded Sophia and her parents, Angel and Josh Myers. Though divorced, Sophia’s parents came together to live in the same home to care for their daughter during her illness.

Since then, literal and virtual communities have wrapped their arms around Sophia, a feisty and competitive little girl with strawberry blonde hair who is her mom’s little “Mini Me” and dad’s little lunch buddy, runner and soccer player.

The love and support surrounding Sophia since her diagnosis is all too familiar to two other Ocean Springs families. They received similar emotional and financial support from a community of friends, family, churches, schools and strangers after doctors diagnosed their children with the same deadly brain tumor known as diffuse intrinsic pontine glioma, or DIPG.

A love for Sophia

Sophia has led such a full life, but she still craves so much more.

She is a competition dancer, a fierce soccer player, a diligent student, a budding fashion maven, an impersonator of many. She loves pranks, jokes and animals, including her own dogs, Governor and new addition, Princess, the 10-month Pomeranian her family adopted for her in August.

Princess is among the visitors that University of South Alabama Children’s and Women’s Hospital staff allow into Sophia’s room in the pediatric intensive care unit. The young pup nestles close to her to offer comfort and distract her from pain.

I want funding and cures, but I don’t want anyone to know this pain. This gut-wrenching, heartbreaking, complete and total devastating pain.

Angel Myers

Her friends at Donna’s Dance dedicated a June recital to Sophia, while she lay fighting off an infection. Her mother’s heart grows heavy and the tears start to flow as she shares the memories of Sophia’s last dance just two weeks before the diagnosis.

Sophia’s schoolmates, from her preschool Montessori days and Oak Park Elementary, have showered her with cards and gifts.

The stuffed animals people have sent her have grown into a mountain on her childhood bed at home, and some line a window of the PICU room in Mobile.

Friends bring pork loin and stuffing, pizza, barbecue, or other dinners for Sophia’s family.

A group of Sophia Myers’ friends gathered to make a video for her to let her know how much they loved her and missed her while she was battling a rare brain cancer. Myers was diagnosed in February with DIPG when she was seven.

A renewed faith

Prayers for Sophia are constant at the request of her mother, whose own faith through her daughter’s illness has rekindled so many spirits in others.

“You know, before this, I didn’t pray all the time,” Angel Myers said. “I didn’t go to church all the time. I didn’t do the things I needed to do, but when a doctor tells you that the only way your kid is going to survive is if you can convince God to give you a miracle, everything changes.”

Angel Myers wants something positive to come out of the struggles her daughter is facing.

“I don’t want people to turn away from God because they see bad things happening to Sophia and other children,” she said. “I just want people’s lives to get better. If it’s spending more time with their kids or putting down the phone, whatever it is, I want something positive to come out of this because it can’t be all heartache. It can’t be all heartache.”

Sophia has long held a special place in her heart for faith and prayer.

On one long day in August, Sophia’s mother was in the kitchen when she heard Sophia’s faint voice in the other room, struggling but still striving to sing the words to “How Great Thou Art.”

Her mother stepped in to sing along.

It was one of those moments the family is thankful for.

“I’m experiencing the worst thing a mom could ever experience and if I didn’t have my faith, I wouldn’t be able to get out of bed,” she said. “I wouldn’t be able to function. I wouldn’t have anything to look forward to other than than my child’s death.”

Angel Myers says her faith in God has been strengthened since her seven-year-old daughter, Sophia, was diagnosed with DIPG, a fatal brain cancer. Myers said she wants something good to come of her illness.

Help pours in

Angel Myers’ co-workers in the District Attorney’s Office for Jackson, George and Greene counties have offered their personal time to their colleague and friend so she can be by her daughter’s side as long as she needs to. They’ve hosted fundraisers and set up a benefit bank account in Sophia’s name.

More than 100 people attended a prayer and praise service in June at the Ocean Springs Yacht Club.

I don’t want people to turn away from God because they see bad things happening to Sophia and other children.

Angel Myers

The DIPG and cancer online support communities have rallied around the family, as Angel Myers follows their pages with updates on the children all over the world suffering from DIPG. The mother posts on Facebook the needs of other children suffering from DIPG and childhood cancer and offers and receives support from other families whose children are suffering from DIPG.

The posts implore the public to push for more federal funding than is currently allotted for childhood cancer research in the United States.

Communities have come together and donated generously to a succession of raffles and fundraisers pledged for Sophia’s medical and the travel expenses.

In addition, the GoFundMe page that friends set up when Sophia first got sick has raised more than $64,000 of a $75,000 goal.

Wishes come true

Sophia has taken special trips, from her days in Las Vegas to meet her pop idol Britney Spears, to a trip to Disney World courtesy of the Make-A-Wish Foundation, to a special seating at the Miss Mississippi pageant that included a meet-and-greet set up by the organizers. On Aug. 30, actor Nicolas Cage visited Sophia and other children in PICU.

One family responded to Angel Myers’ call to use a van to help ease Sophia’s pain and discomfort for her most recent trip to the children’s hospital in Atlanta, where her family learned the cancer had spread.

An artist from Georgia, Elizabeth Fritz Bachman, is donating a watercolor portrait of Sophia, from a professional photography session when she was 4. Bachman had never met Angel Myers but had been following her story of Sophia and said she felt called to paint Sophia just as she had painted the portraits of several other children across the nation who had battled DIPG.

Angel and Josh Myers are comforted by the love, the gifts and the prayers, as their daughter slowly slips away.

“Thanks just doesn’t seem adequate enough,” Angel Myers says of all of the love, prayers, gifts and donations for Sophia and the family during her illness.

“I hope you are never aware of cancer like we are,” she said. “I hope you never know. I want funding and cures, but I don’t want anyone to know this pain. This gut-wrenching, heartbreaking, complete and total devastating pain. My only child. My whole world. My everything. There is an awareness in me of the fragility in life, the resiliency of a child, the desperation of the heart and mind that I pray you never know.”

Margaret Baker: 228-896-0538, @Margar45

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