Sophia Myers has garnered the support and prayers of Mississippians since her diagnosis with an inoperable brain tumor, but state lawmakers are pushing to do even more for the Oak Park Elementary first-grader.
State Sen. Brice Wiggins is among a local delegation of state lawmakers working to designate one day each year to honor the 7-year-old in her battle with diffuse intrinsic pontine glioma, known as DPIG.
Wiggins hopes to see the measure passed in the next legislative session to increase awareness of the rare and aggressive cancer that affects 200 to 300 children nationwide annually.
“At a minimum, we want this family to know they have brought awareness to this condition and that literally people in Jackson and all over the state are pulling and praying for them,” Wiggins said, “and they are here to help them.”
‘There is no cure’
Sophia’s parents, Joshua and Angel Myers, are humbled by the recognition.
“No parent or child should have to go through this,” Angel Myers said. “It is a living nightmare every day. Our faith sustains us and we do believe in miracles. I am truly grateful for the awareness they are bringing to this disease.
“I can tell you that Sophia’s suffering will not be in vain. We are fighters and we are fighting for a cure now and won’t stop until there is one,” her mom said.
A DPIG diagnosis is devastating for families, she said.
“A parent is looking at a child who seems overall healthy and the doctor is telling you they will likely die within a year and if you are lucky, you will get two or three years with them,” she said. “There is no cure, only experimental trial drugs that is a crap shoot.”
“Sometimes, we spend all this time on policies, but at the end of the day, it’s all about people,” Wiggins said. “We want this family to know at a minimum they have brought awareness to this disease. This is definitely something to honor Sophia and her family. They have literally taken lemons and made it into lemonade.”
District Attorney Tony Lawrence also is backing state lawmakers in their plan to set aside a day to bring awareness to the deadly cancer.
“This is a cancer that robs families of their children and takes children of the future,” Lawrence said. “I hope some day a cure can be found that will prevent other families from having to experience that which Angel, Sophia, Josh and all their family are experiencing.”
Since her Feb. 22 diagnosis, doctors at Blair E. Batson Children’s Hospital at University Medical Center in Jackson have treated her. The family also consulted with Dana-Farber Cancer Institute in Boston before selecting a team at Emory Children’s Healthcare of Atlanta to treat her.
The inoperable tumor on a child’s brain stem affects their basic functions, such as swallowing, breathing, vision and speech. Like other children diagnosed with the disease, Sophia is experiencing some of those issues, including problems with her balance and vision.
Sophia, affectionately called Bug by her parents, is in her third week of radiation and her second week of treatment with the clinical trial drug, Abemaciclib, her mother said. The clinical trial is conducted in conjunction with Emory School of Medicine.
“We have seen some improvement in the movement in her left eye (since the treatment began),” she said, although her only child has also dealt with bouts of nausea and vomiting. She is on high dose of steroid treatments.
“The nausea and vomiting has almost completely subsided,” she said. “We are reducing the steroids and hope to be completely off of them by next week. They are such a necessary evil. They not only physically impact the child, they really take a toll on their emotions. It’s hard to watch her go through it. We are helpless. She still has balance issues when walking and has weakness and loss of feeling in her right side.”
Despite the issues Sophia is facing, she continues to be brave and is making the best of her condition.
“Her sense of humor has kept all of us in stitches at times,” Angel Myers said. “It seems like just when we need it, she says something funny.”
Sophia has a message to those offering her support.
“Thank you everybody,” Sophia said in a video message to the Sun Herald for readers to see. “I’m thanking y’all for all the stuff y’all gave me and everything and all the prayers that y’all been giving me.”
When she learned lawmakers were working to designate a DPIG Awareness Day in the state, Angel Myers said she was moved to tears.
“I am so truly grateful for the awareness they are bringing to this disease,” she said.
How to help:
Donations can be made to a GoFundMe account a relative set up or at any branch of Coast Community Bank. Checks should be made to the Sophia Myers Benefit Bank Account.
Other fundraisers include:
▪ Love for Sophia Benefit 5K run/walk begins at 8 a.m. May 6 at Fort Maurepas Park in Ocean Springs. Registrations fees are $20 until May 1 and $25 after that date. Registration and sponsorship forms are available at Oak Park Elementary or Tri Hard Sports in Ocean Springs or email Lara Jenkins at email@example.com for help. Checks to register should be made to the Sophia Myers Benefit Account.
▪ Third Annual Gray Over the Bay Brain Cancer Awareness 5k Walk/Run begins at 9 a.m. on May 13 the Ocean Springs side of the Biloxi Bay Bridge. Registration begins at 8 a.m. Team Sophia is one of the groups participating and selling Team Sophia T-shirts to benefit the family. Email Cherie Wade at firstname.lastname@example.org to buy one of the shirts.
▪ Second Annual Marjorie Williams Charity Softball Tournament begins at 8 a.m. May 20 at the Ocean Springs Sports Complex, featuring Drug Court participants teaming up against law enforcement officers. All donations go to Sophia Myers and her family.