Dinwiddie mom spreads awareness about rare blood disease that ki - NBC12 - WWBT - Richmond, VA News On Your Side

Dinwiddie mom spreads awareness about rare blood disease that killed son

Jimmy Barnes was 19 when he died. (Source: Family photos) Jimmy Barnes was 19 when he died. (Source: Family photos)
DINWIDDIE, VA (WWBT) -

The first time her son's face started to swell, Jenny Barnes was rendered speechless, staring at a child she hardly recognized.

"The whole side of his face was three times bigger than one side of his face," said Barnes.

Barnes rushed then 5-year-old Jimmy to the hospital. After rounds of testing he was diagnosed with Hereditary Angioedema or HAE. It’s a rare, and life-threatening blood disease.

Patients with HAE are missing a key protein, so excess fluid streams through their blood vessels causing debilitating swelling.

"He used to say 'Mama I'm a monster,'" said Barnes.

HAE can be hereditary, but swelling attacks can happen without warning often triggered by stress, or excitement.

As a child, swelling in Jimmy's feet, stomach and face it made activities the little boy loved, or simply getting dressed, nearly impossible.

"He had his happy moments, but it was always kind of sad because it always felt like he has this cloud over him," Barnes. 

Jimmy died in 2008. He was just 19 when his throat closed during a swelling episode.

For many who suffer from HAE, it's s a frightening reality.

Barnes says the disease is so rare patients are often misdiagnosed as having an allergic reaction. Every time she took Jimmy to the ER, she'd have to explain his condition to a new doctor.

"It used to irritate me. ‘What did you get into little fella, what are you allergic to?' No sir, he's not allergic to anything,’" said Barnes.

Now Jenny is taking part in a new documentary, "Special Blood." She hopes the film shines a light on HAE, and encourages doctors to learn more about the how to treat those battling the disease.

"You may never need it, but at least you can be somebody's hero if they show up in a crisis," Barnes said.

Although HAE is rare, Barnes believes there are more people out there with the disease than get diagnosed.

"We have people that will still sit at home with their throat swelling because they don't want to go to the ER," she said.

She hopes sharing Jimmy's story, and the story of his death will encourage others to get tested.

"He had a purpose in his life, and he had a purpose in his death, and in his death he could accomplish what I knew the little boy in him would have wanted to see happen," said Barnes.

A screening for "Special Blood" is being held Thursday: 

  • What: SPECIAL BLOOD special Colonial Heights Screening
  • When: Thursday, December 8, 2016 6:30 - 8 p.m.
  • Where: Regal Southpark Mall Stadium 16, 300 Southpark Circle in Colonial Heights
  • Click here for more information and tickets.

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