Nancy and Brad Zakes are nearing the end of a four year fight. Since the day their son died, they have worked tirelessly to ensure every newborn in Washington is screened for the rare brain disorder Adrenoleukodystrophy, or ALD.
Ethan Zakes was like any other 10 year old. He loved to skateboard, was into legos and playing games.
"Ethan was a really happy kid, he was always smiling, always having fun, always coming up with inventions and different things to do, he was just a blast to have around," his mom Nancy said.
From the outside, Ethan looked completely normal, no one knew anything was wrong. It wasn't until fall of 2010 that the symptoms became more obvious.
"We started to notice issues with handwriting and his speech became a bit more slurred," Ethan's dad Brad said. "This was a kid who was very athletic, a very advanced skateboarder, and was suddenly having troubles with balance."
Doctors diagnosed him with ALD, a rare brain disorder that mostly affects boys and men. Eventually it destroys the nerve cells that allow people to think and move muscles.
"What we told Ethan is that there are some problems with the white matter in your brain and we're working really hard to try to get it fixed," Brad said.
Eventually, the ALD became too much. He lost his ability to walk, he lost his vision, his ability to speak, and was bedridden.
"It was awful, it was absolutely awful, there was nothing I could do," Nancy said. "There was one morning where Ethan woke up and normally he was such a happy kid, even at the end. And he couldn't see at that point and he started crying, and there was nothing I could do to make him stop crying."
Ethan died in May of 2011, just six months after he was diagnosed.
The fight for a chance
The hardest reality for the Zakes to accept is that Ethan was born with this disease, but they didn't know about it until it was too late.
"I just think every child deserves a fighting chance... Ethan wasn't afforded that chance," Brad said.
That's why the Zakes have spent the past four years pushing the Department of Health to screen every newborn in Washington for ALD.
"What we're looking for is to give a child hope, whereas Ethan had zero hope, or close to zero," Brad said. "If they know early, these kids have a serious fighting chance of leading a normal life."
In Port Townsend, Titus Fordham is a living example of how early detection may save lives. Titus is just four years old, but after some medical issues earlier this year, he was diagnosed with ALD in June. Doctors think they may have caught his ALD in time.
"We're very fortunate in the fact that we have hope," Titus' dad Tyler Fordham said. "He wants to be a doctor someday and go to school, and we have hope that he can still do all those things."
Titus will have an MRI every six months and will eventually have a bone marrow transplant.
As much as Titus' parents are thankful he was diagnosed early, they know it took a medical incident for them to learn their son had ALD. Since babies with ALD are born with the disease, they believe, just like the Zakes, that every parent should learn about the diagnosis at birth.
"He's supposed to be running and playing and he shouldn't have that taken away from him just because he didn't get the test done," Titus' Mother Rachel Fordham said. "We shouldn't have to be the lucky one, and we realize in the ALD world we're the lucky ones."
ALD affects only one in 17,000 babies, but currently the state newborn screening lab tests for diseases rarer than this one. Estimates suggest the test would cost about $8.00 per baby.
At the end of October, Nancy had her final chance to convince a Department of Health board that adding ALD to the screening list is a good idea.
"We have some incredible scientific minds, some great economic minds, but now I want to tell you from a parents perspective what ALD has done," Nancy said to the crowd. "This is my son Ethan Zakes and he died of Adrenoleukodystrophy."
"I know that it's an economic decision, I know that it's a scientific decision, but I am asking from the bottom of my heart, please let other families have the chance that Titus has to get treatment for this horrific disease. And please don't let another family go through what our family and community has gone through with losing Ethan."
The board will make a final decision in January; the Zakes are hopeful that they will make the right choice.
"Hopefully everyone will agree that it's the right thing to do," Brad said.