AUSTIN, Texas — Simon Croke is a straight shooter.
The 5-year-old Austin boy will tell you that it doesn't take much to keep him happy. All he needs is a little supervision from his mom, Alina, or his dad. Jeremy, a ball and a hoop.
It's a hoop that represents hope.
"[We] know how precious every single day, every single moment is," Alina said.
As long as Simon keeps shooting, his parents will keep fighting.
"I can't even imagine what's going to go through his mind when that potential day occurs," Alina said.
Her own battle
Alina is no stranger to a fight herself. Her own battle started in January 2013.
"I was diagnosed with a very aggressive form of cancer," she said. "Triple negative breast cancer. Before starting treatment, [my doctor] recommended seeing a fertility specialist, knowing that we had planned on trying to start having children."
"We were told that we couldn't have kids," her husband said. "Part of that was our decision at the time not to save eggs just because she needed to get into treatment as rapidly as she did, so the focus was all around her health."
"If there was no mom, then there were obviously no children, so I started chemotherapy right away. I was left with no evidence of disease by the end of September of 2013, but it also left me infertile," Alina said.
The family was in need of a miracle, and two years later, their full-court prayer was answered.
A prayer leads to a miracle
"I'm walking up the stairs and she says, 'I've got some news for you mister. I've got something to share with you. Things are never going to be the same,'" Jeremy said.
"I got pregnant. And that was our Simon," Alina added.
Yet the fight was just getting started, and two years after that the family was given a fatal diagnosis.
"We learned that he has Sanfilippo syndrome, which is a fatal neurodegenerative condition. He will likely plateau somewhere around 3 to 5 years of age, and then progressively lose his ability to talk, walk and eat after that and potentially develop seizures. [He'll] be in significant pain on his way to passing away as a child or teenager," Alina said.
Alina told KVUE a miscommunication at the doctor's office led to them discovering Simon's disease on their own.
Finding a cure
They now find themselves in a similar situation — on their own to find a cure.
"With rare diseases, it falls upon the families of kids with those rare conditions to raise the funds," she said. "It's grueling. It's grueling work, but we wouldn't do this if we didn't dearly love our kids and hope to save their lives."
"I go back and forth between feeling depression and total devastation and also knowing I can't stay in that mindset," Jeremy said.
The family's goal is to raise $1 million, at which point they hope a clinical trial can start.
"My husband and I live with grief in the present because we know it's going to happen unless a cure is found," said Alina
They know that finding a cure for Simon might be a long shot. Yet Simon is no stranger to long shots.
His parents are banking on a buzzer beater.
"I know that he is meant to be a leader to pave the way to finding a cure for Sanfilippo syndrome for himself and other kids with this fatal condition," Alina said.
"Our hope is that Simon is the first child with Sanfilippo who is able to live a normal life," Jeremy said. "He's proving that the impossible is possible."
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