ST. LOUIS — A 3-year-old girl from Imperial is battling a rare fatal disease.
Ava Martin was diagnosed earlier this year with Batten Disease, which affects nine out of 100,000 births.
Her family continues to fight daily for her.
“We are here today asking for prayers in hopes she responds positively to these infusions. She visits St. Louis Children’s Hospital every 2 weeks for infusions which started Feb. 11. Her first four were overnight stays to ensure she responded positively” said Kristen Paulson.
Ava began having seizures last October. She was diagnosed with epilepsy and put on medication to treat the minor seizures she was enduring. In December of 2019 she had an MRI, spinal tap, genetic testing, and many rounds of her blood being drawn and then learned she had Batten Disease in January of this year.
According to a press release from the Imagekraft Agency, Batten Disease is a genetic condition that affects children through the nervous system eventually causing vision loss, seizures, coordination problems and dementia-like symptoms. As the disease progresses, children will go blind and lose all cognitive functions and ultimately becoming fatal.
The treatments to ‘slow down’ its progression and manage symptoms will be every two weeks for the rest of Ava’s life.
“St. Louis Children’s Hospital has approved Ava to receive her treatments locally every two weeks. Ava is the first, yes, the first child to receive these treatments here and I pray that any child who has to go through this can go through St. Louis Children’s Hospital as well”, said Kelsey Ava’s mother.
According to the press release, Ava’s parents are frequently missing work and struggling with the medical bills. A GoFundMe was launched to help with the expenses.
