In-depth: Hope for 16-year-old California boy fighting rare genetic disease

DANVILLE, Calif. (KRON) — It is a story about courage, tenacity, and perseverance.

It is about parents who are keeping up the fight to find a cure to a rare genetic disease that has gripped their son for 16 years.

The McHale family in California has dramatic new hope Friday night because of a breakthrough in modern medicine.

At 6 months old, doctors told Danny McHale’s parents to kiss him for the last time. He had a terminal disease and this was it.

The diagnosis crushed new parents Joe and Mary McHale.

“Is this the end? It was really hard but Danny did not give up,” Mary said.

The bubbly baby boy had spinal muscular atrophy or SMA. It’s a rare disease affecting muscle strength and movement.

“We just wouldn’t accept that we would lose him,” Mary said.

Danny has been in a wheelchair since age 2.

Before the age of 5, he was hospitalized numerous times with multiple surgeries, including a spine operation to correct scoliosis.

There were times the McHale’s questioned if they were saving for a funeral or a college education.

“I would say that we’ve learned that we have to believe in miracles and fight for them,” Mary said.

And fight they did.

Now, Danny thrives.

The 16-year-old high school junior zips around Monta Vista High School in Danville where he excels in algebra and physics.

And he is one of the most well-liked kids in school.

At home, he needs constant medical care, including treatments to clear his lungs.

Never far from his side is service dog Lake.

Years of dedication, determination, and grassroots efforts to raise millions of dollars has also lead to a breakthrough.

“My expectation, the hope at a minimal level, was that it would at least stop the progression of the disease and that anything above that would just be icing on the cake, and so I think that we are experiencing the icing on the cake,” she said.

Danny just has started a new drug, called SPINRAZA.

Just approved in late 2016, the medicine is altering Danny’s genetics, creating more proteins and building muscles.

It is injected like an epidural in the spine.

Interestingly, the injection was done by the same doctor who examined Danny at 6 months and told his parents he would not live long. Now, after just two doses, the McHales say Danny moves like they never thought possible.

His right arm rises to his chest. He can wiggle his fingers. Kick his foot.

He is gaining strength, allowing better control of his head and wheelchair. And his speech is starting to improve

“There is a light on in his eyes,” she said. “He is on fire. He is so excited now about having the possibility of hope rather than loss.”

Danny has several more doses of SPINRAZA to go, where it could lead beyond any expectation the McHales had for their little baby boy.

Instead of a kiss goodbye, there is one of hope and happiness.

Danny’s parents are so encouraged by the new drug, not just for their teenaged son, but for what it means for other children who now might be able to get the treatment when they are first diagnosed as infants.

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