Tuesday, November 17, 2015

Adrenoleukodystrophy stories

A boy battling a rare disease reported for duty Friday, becoming a cadet for a day at the United States Air Force Academy.

Cole Chavez, 7, is diagnosed with a disease called adrenoleukodystrophy, or ALD. ALD is a deadly genetic disease that affects one in 18,000 people.

Chavez' cousin also suffered from the disease and lost his battle.

"Because of the diagnosis in him, it was caught early in Cole. So actually the first grandson saved the life of the second grandson," said April Adler, Chavez' grandmother.

Thanks to the Make a Wish Foundation and the AFA's Cadet for a Day program, Chavez spent the day touring the athletic facilities at the AFA and spending time with the cadets.

"The most rewarding part for me is I get to see the joy that we get to bring," said Cadet 1st Class Konnor Moden, one of the cadets in charge of the program. "I can't tell you what it means to these kids who are really struggling with their disease, and to get a day as a normal child, to live and have fun without worries about what they have to deal with."

Adler said she hoped others would take time to appreciate good health and not take things for granted.

"People have their lives and they're in such a hurry. They don't know what is going on with other people," Adler said. "You never know who you're passing. Everybody has a story."


A year and a half after getting a life-saving bone marrow transplant, 4-year-old twins Kolby and Kyle Easterling, who have connections to the Jonesville area, continue to require weekly visits to the doctor and special medications for their disease, Adrenoleukodystrophy.

The transplants, completed April 25, 2014, at Duke Hospital in Durham, were successful, said Kayla Easterling, the boys’ mother who now lives in Statesville...

“We had gotten home from the hospital in late September last year, and they still have very low immune systems and have to stay isolated from other people. It is easy for them to get sick. They can’t have the vaccinations yet, so they can’t attend school. We have a person that comes weekly for home therapy,” said Easterling.

Due to the medical needs of the boys, who were diagnosed at 1 month old, she’s been unable to work. “We still have to go to Baptist a lot,” she said.

Kolby is adjusting well to his donor’s bone marrow cells, but Kyle’s body is taking much longer to adjust so he still battles a lot of side effects and is required to take more medication to fight his body rejecting the transplant.

“The medicines are to slow the growth of the marrow cells so they won’t attack his body. He has rashing inside his gut and skin rashing,” Easterling said.

“Their bodies will eventually adjust,” she said, noting that Kolby’s portacath will likely come out during his next appointment and she is hopeful he’ll be able to start school a couple of times a week next year. “But Kyle’s a little farther behind him.”

She explained that transplants can take up to a year or more to adjust, and they required chemo afterward...

“The transplant is not a cure for the disease, it just stops the progression,” explained Easterling. “The donor cells halt the disease. When they get older, we won’t know what problems they’ll face. There have not been that many successful transplants or kids survive that long.

“We are very fortunate to have a successful transplant. We are very blessed and thankful for a successful transplant,” she said.


1 comment:

  1. 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 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.