Sweet Amelia is one tough cookie
Amelia's parents are now passionate advocates for newborn detection, when she could have been treated with gene therapy.
Sweet Amelia is one tough cookie, despite a serious medical diagnosis.
Aaron and Krystle Myers are in a fight to save their daughter, Amelia. Two years ago, ten-year-old Amelia Meyers was running, playing and jumping on the family’s trampoline at the family’s home in Marengo, IL.
Not long after, her parents, Aaron and Krystle Meyers, noticed that she was walking on her toes and in circles. She was clumsy and kept falling down. She fell down the stairs and broke her toe. The family felt the stairs were too dangerous and decided to sell their two-story home. They had heard good things about the schools in Roscoe and Rockton and found a one-story home in Roscoe and enrolled the children in the Kinnikinnick School District.
Krystle and Aaron were concerned when she began having silent seizures and was unable to write her name. “She was a bright little girl,” her mother said. “She had started reading when she was in kindergarten.”
Something was happening to Amelia’s body. Symptoms kept accumulating. Her legs gave out and she was unable to walk. Talking was becoming more difficult. She had trouble sitting and she was having silent seizures.
The concerned parents took Amelia to a psychologist, who diagnosed her with dyslexia and prescribed Ritalin. They were against giving her the drug.
She was tested by teachers, social workers, an ENT physician, and autism experts.
Aaron and Krystle took her to Lurie Hospital in Chicago, then to Mayo Clinic and the University of Minnesota. None of the doctors could give them a firm diagnosis.
Finally, they took Amelia to University of Wisconsin Hospital in Madison, WI. She spent two weeks there and, after an MRI scan, was diagnosed with Juvenile MLD – Metachromatic Leukodystrophy, an inherited, and rare, type of terminal brain cancer. MLD is an autosomal recessive genetic defect. If detected soon enough, it can be treated with gene therapy.
This wasn’t the case for Amelia. Doctors told the family that their little girl was now terminally ill. If she had been diagnosed shortly after birth, she probably would have been cured.
One of out of ten people carry some genetic mutation that can cause a serious disorder or disease. An estimated one in a hundred people carry the MLD disease.
Both Krystle and Aaron are carriers, as are their two sons, Emerson (6) and Kaylen (14). The boys will not inherit the disease, but could possibly pass it on to their children.
“Aaron and I are passionate advocates for awareness of MLD and newborn detection,” Krystle said. They have traveled to Springfield and Washington DC to give testimony about the disease and how it has affected their sweet little girl.
They had the support of Senators Dick Durbin and Tammy Duckworth for passage of Legislative Bill SB67, making newborn testing for MLD a legal requirement.
The bill passed in the Illinois Senate and House in May 2023. It now needs the signature of Governor J.D. Pritzker to become law.
The Myers family is hopeful Pritzker will sign the bill into law by September 2023. The next step will be for newborn testing for MLD nation-wide.
Amelia is currently hospitalized at Lurie Hospital at the Shirley Ryan Ability Lab, where she is receiving state-of-the-art therapy and palliative care.
“She is weak and has a feeding tube,” Krystle said. “I need to stay here with her. Aaron is at home with the boys.”
Recently, the whole family was able to take a trip to Disney World in Florida, through the Make a Wish Foundation.
Amelia is a Girl Scout and was able to take part in the Memorial Day parade in Rockton on May 29, 2023.
Friends of the family have started a GoFundMe page to help the family defray the cost of care for Amelia and to spread the word about MLD. She also has a wish list on Amazon.
Learn more about Amelia on YouTube and on her webpage, ameliaonetoughcookie.com.
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