AZ mom raises awareness as her sons battle rare disease - KTRE.com | Lufkin and Nacogdoches, Texas

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AZ mom raises awareness as her sons battle rare disease

© CBS 5 News © CBS 5 News
PHOENIX (CBS5) -

Many families face hardships, but when you learn what one Valley woman and her sons have been through in just the last four years, you might wonder how they're able to go on.

Janelle Syverson and her 10-year-old son, P.J. spend most of the day very close to each other.

Last November, P.J. was diagnosed with a very rare neurological disease called Adrenoleukodystrophy (ALD) and after a severe stroke recently, he can no longer see and can barely walk. But with each sense he loses his affection seems to grow.

"Like I said, every day is a blessing and I just thank God for each day that we have," Syverson said.

P.J.'s condition will steadily decline. He will most likely be in a vegetative state within the next two years.

ALD is incredibly rare, just one in 17,000 boys have it.

Syverson's oldest son, Kody, tested positive after they caught it in P.J., but because they discovered it early, Kody has a chance.

"P.J. saved his brother's life. He's an angel here on earth, he really is," Syverson said. "I try to take comfort in knowing that P.J. is going to be not only with his heavenly father, but his earthy father too."

The boys' father, Kip, passed away three years ago after three separate bouts with cancer, leaving Syverson with an extraordinary emotion and financial burden.

She had to retrofit the family bathroom with handicapped attachments for PJ. She didn't have that kind of money and has to put it all on a credit card.

"I was immediately drawn to P.J. and his smile," Chad Romanoff said.

Romanoff used to treat P.J. as an occupational therapist and he's the one who brought their story to CBS 5 News.

"You are an amazing mother, and P.J. has really touched my heart," Romanoff told Syverson. "So I reached out to CBS 5 and they've given me some money to help you out."

Romanoff presented her with $500 cash.

When Syverson isn't taking care of the boys, she advocates for a simple screening for ALD at birth that could save other children from this fate and save families from similar heartbreak.

A newborn screening for ALD is in practice in New York and has helped identify the disease in eight children this year alone.

"Hug and kiss the people you love every day. More than just tell them. Really cherish every moment and every day, don't take it for granted," Syverson advised.

RELATED LINKS:

  • YouCaring: The Brave Syverson Boys
  • GoFundMe: The Brave Syverson Boys
  • Change.org: Save the Boys
  • PJ's Purpose on Facebook
  • ALD-AMN Global Alliance
  • Be The Match
  • The Myelin Project
  • Copyright 2014 CBS 5 (KPHO Broadcasting Corporation). All rights reserved. 

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