Heartbreaking: Man with ALS grieves beside terminally ill 5-year-old granddaughter

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Heartbreaking: Man with ALS grieves beside terminally ill 5-year-old granddaughter

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Hospital room.

It’s a photograph that will break your heart. 

A 5-year-old Florida girl lies in a hospital bed, connected to a ventilator as she fights against an aggressive brain cancer. Her grandfather sits nearby, himself ravaged by Lou Gehrig’s disease, crying even though he no longer has the ability to speak.

Six weeks ago, Braylynn Lawhon was preparing to celebrate her fifth birthday when she was diagnosed with a diffuse intrinsic pontine glioma tumor, a form of brain cancer that most commonly affects children between the ages of 5 and 9. According to the Dana Farber/Boston Children’s Hospital, approximately 300 children are diagnosed with DIPG each year.

The girl’s grandfather, 49-year-old Sean Peterson of Gulf Breeze, has been battling amyotrophic lateral sclerosis for two years and has taken a turn for the worse, The Pensacola News Journal reported. Peterson is now unable to talk and can barely move his hands, the newspaper reported.

Posted by Ally Parker on Tuesday, January 9, 2018

Both illnesses have been difficult for Ally Parker, who is Braylynn’s mother and Peterson’s daughter.

“Last year was hard for us, but I can't even begin to explain how difficult this year will be and has already been,” Parker wrote in a Facebook post on Jan. 9. “In a few days I will have to bury this beautiful little girl. Months, maybe even weeks, later, I will have to bury my father. Both of my heroes, gone, within the same year.”

When Peterson visited his granddaughter at the Studer Family Children's Hospital at Sacred Heart in Pensacola, he could not hide his grief.

“Tears were coming out and this horrible noise was coming out, but that's all he could do,” Beth Peterson-Hickman, Braylynn's grandmother and Peterson's ex-wife, told the News Journal. “I had to turn around. I thought maybe it upset him because I know he hasn't wanted me to see him like this.”

Parker has been giving updates about Braylynn’s condition on Facebook and is punctuating them with the hashtags #BraylynnsBattallion and #FightLikeAGirl, among others.

“DIPG is a monster,” she wrote in a Jan. 9 post on Facebook. “It seems as if it targets the people who have the most to lose, who are supposed to be the happiest, but also the people who are strong enough to deal with this gracefully and courageously.”

Because Braylynn’s condition has deteriorated, Parker is resigned to the fact that her daughter -- nicknamed Princess Belle -- has precious little time to live. 

“I nicknamed her 'Belle' before she was even born because her initials were 'B-E-L,'" Peterson-Hickman told the News Journal, referencing the character from the Disney movie “Beauty and the Beast.” 

Peterson-Hickman said the family plans to hold a Disney-themed funeral. 

“She's gotten five or six Belle dresses mailed to her from complete strangers because we want to bury her in a Belle dress,” Peterson-Hickman told the News Journal. “They've sent tiaras and slippers and little gloves and all kinds of stuff to her.”

Parker, in a Facebook post on Thursday, wrote that “someone needs to find a successful treatment for this so our kids stop dying.”

“It may be too late to help my princess, but it gives other kids a little more hope,” she wrote.

GoFundMe account has raised more than $69,000 for Braylynn, as of early Saturday morning.

My phone is blowing up constantly and I can't do anything on it. This morning, several people informed me that People...

Posted by Ally Parker on Thursday, January 11, 2018
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