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"I don't know what it is, but there's no cure. He won't get any better, and he won't get any worse," said the doctor to Marlo after examining her son Dante for only five minutes.
Marlo's heart sank. The doctor was partially right. There is no cure for Batten's disease, the illness afflicting Dante. But his condition will get worse. "I knew when he was six months old that something was different about him," said Marlo. "But no one knew what it was."
At age three, Dante had an MRI showing more than what doctors expected to find. Besides autism and muscular dystrophy, he had a white brain matter disease. More problems arose. The symptoms weren't matching up, and Marlo was dissatisfied with the doctors' diagnoses. "You can't stop looking," she says. "What if it's something they've never seen before, and what if there is a way to treat it? What if there is a cure? What if?"
Dante saw a geneticist who said he has a "lysosomal storage disease" caused by a protein deficiency. Instead of expelling the "trash" cells don't need, his cells keep it.
Marlo contacted Children's Angel Airlines and was provided with tickets so she and Dante could fly to Boston for a medical consultation with a Batten's disease specialist. They traveled again to Ohio to the Batten Disease Support and Research Association Conference. There, doctors from all over the world who specialize in Batten's disease studied Dante in a clinical setting to try to find answers.
"We are so thankful for Children's Angel Airlines," said Marlo. "God has sent his angels to help us."