- Associated Press - Sunday, February 7, 2016

NEWNAN, Ga. (AP) - When Erin Scharko-Fisk was 14 weeks pregnant with her second child “we were told he was not compatible with life.”

An ultrasound showed that little Micah had a thickening around his neck. “Which doesn’t sound scary but apparently that is a big red flag that there is something wrong,” Erin said.

Doctors told her Micah - whom they wouldn’t call by name - might have a trisomy chromosomal abnormality. Either Trisomy 13, 18, or 21. The Scharko-Fisks were told that Trisomy 21, Down’s Syndrome “was the best we could hope for. What they really thought was that he would not survive the pregnancy.”

Though doctors had urged Erin to abort, Micah was born healthy. He just had a little extra skin around his neck.

“He never spent one night in the NICU. He was perfect. To us, it was a miracle,” Erin said. “I still think it was a miracle.”

Everything was great for three weeks. And then, one day, “he quit breathing and he turned blue.”

A few minutes later, he was fine. It took a while for doctors to find out what was going on - little Micah was having seizures. And when he had them, he stopped breathing.

Erin and her husband Joe “didn’t think seizures could be anything other than grand mal. We didn’t know you could have seizures where you’re just fixed and focused and you quit breathing.”

The seizures continued, and Micah started vomiting during them.

“It’s not like a normal person when you vomit. It is one of the most frightening things to watch,” Erin said. “If he is lying on his back it is kind of seeping out of his mouth. He just has to lie there until it passes.” He can’t clear his airway while he is seizing.

The seizures have gotten more frequent; now they come on in clusters. They’ll happen when Micah is in his car seat, or just having fun at the playground. “Sometimes you don’t know that it is happening until he is in trouble,” Erin said.

They’ve tried different medications, but they don’t work.

The best option, right now, is a seizure dog for Micah. The dog will be with him at all times, and can sense when a seizure is about to happen.

“There is nothing on the market that is proven to work as well as a seizure dog,” Erin said.

So the family is working to raise $15,000 for Micah’s dog. They are working to get a dog from 4 Paws for Ability. As soon as the money is raised, 4 Paws will begin training Micah’s dog to recognize his scent. Micah will start wearing an undershirt at all times.

“Any time he has a seizure, we take the shirt off and send it to them,” Erin said. “It is really amazing what these dogs can do. That is what we have been told is going to be the best thing for him.”

Some service dog organizations provide a dog for free. But the waiting lists can run for five years or more.

“We don’t have that long to wait. And we’ve heard horror stories of people that have sat on the waiting list for three years and then were bumped for one reason or the other,” Erin said.

4 Paws breeds its own dogs, and screens them to make sure they are well qualified. They’re trained from birth to 18 months old. Because of Micah’s age and the seriousness of his situation, his family wants the best dog possible.

They had to go through an extensive application process, including many referral letters and a medical assessment by their pediatrician. They were approved in November and began fundraising.

It has gone slowly. The family only recently moved to Coweta. Joe was born in Fairburn but they lived in Nashville for a few years and Dahlonega before that. They moved to Douglas County to be closer to Erin’s dad after his stroke.

They’re trying to come up with fundraising ideas. They have a page on Firstgiving.com and a t-shirt fundraiser at https://www.bonfirefunds.com/team-micah-help-micah… . To donate on Firstgiving.com, enter “Micah Scharko Fisk” into the search box.

You can also donate or read about Micah at https://4pawsforability.org/micah-scharko-fisk/ .

“We’re trying to do everything we can think of. For me, besides homeschooling, it’s my full-time job fundraising,” Erin said. “Whenever I have spare time I just try to get the word out to let people know - if you’re looking for somebody to help we sure could use the help. I have faith that it is going to happen.”

So far, they’ve raised $3,000. They’re hoping to reach their goal by May or June. “More realistically, it may be this time next year,” Erin said.

Taking care of a baby with seizures is one thing. An active 3-year-old is something altogether different.

Micah can’t go off with friends. He can’t stay with a babysitter. He can’t even sleep in his own room. He has to stay in the bedroom with his parents, in case he has the seizures. With a seizure dog, he will have more freedom.

Doctors don’t know why Micah has seizures, and they are getting more frequent.

Erin said people always ask if they are trying CBD oil, derived from marijuana. They are not, because Micah’s doctors at Children’s Healthcare of Atlanta are not on board.

“We really trust our doctors,” Erin said. But she thinks, eventually, the doctors may begin to recommend the CBD treatment. If things get really bad, it’s possible the family might go somewhere that Micah can use it.

“But right now he has so many good days,” she said. “If we can get the dog . you’re never going to be without anxiety, but it would be better.”

These days, Erin and Joe laugh that anyone could think anything about their son was “incompatible with life.”

“Micah is the happiest kid and the most compatible with life we have ever seen,” Erin said. “He never stops smiling. We say he’s just happy to be here.”


Information from: The Times-Herald, https://www.times-herald.com

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