Papillion Boy Dying From Rare Disease, Parents Fighting To Fund Possible Cure

PAPILLION — The clock is ticking for a four-year-old Papillion boy.

He has a rare disease called Hunter Syndrome that is slowly killing him.

Doctors say Ryan Austin could be gone as soon as his 12th birthday, but his parents may now have a chance to save their son's life.

'"I asked her, I said, "Is my son going to die?"'

It's what Lindsay Austin asked a doctor after finding out her son, Ryan, had a terminal disease called Hunter Syndrome.

Lindsay said, "It was definitely the worst day of my life."

Ryan was two years old when diagnosed. Now at four, the disease has affected him even more and he has to get weekly treatments.

Matt Austin, Ryan's dad, said "It starts to impact their joints, his elbows, his knees. His ankles start to stiffen up. It gets hard for him to walk."

The disease is also affecting Ryan's mind.

Matt said, "He starts to lose his speech and he starts to lose a lot of the things that he used to understand."

Doctors say Ryan could be gone before he even reaches high school, but his parents aren't giving up.

Matt and Lindsay kept a dream board from Ryan's first birthday that is cut out in the shape of the number one. On the board family and friends wrote what they thought Ryan would be when he grew up. Matt and Lindsay are determined to have a number eight sitting next to it when he turns 18.

They're hoping that gene therapy will help make this happen.

Matt said, "They inject a virus into your body and it carries a piece of DNA, and it goes to the cells that are affected and swaps out the bad DNA with the good."

Matt says funding this will cost over $3 million, but through organizations like Project Alive over $300,000 has already been raised.

Matt said, "It's not the end for us. We know that we have a chance and we have hope."

They have hope that the dreams on Ryan's board become a reality.

Matt and Lindsay say pharmaceutical companies won't host clinical trials since Hunter Syndrome is so rare.

Only 2,000 kids worldwide have it, but they say if gene therapy cures Hunter Syndrome it could be the start to curing other diseases.