A 5-year-old girl who appeared in a viral photo with her distraught and terminally ill grandfather has died after a battle with brain cancer. In December, Braylynn Lawhon was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) tumor, a deadly form of brain cancer – she was placed in hospice care almost immediately.
Lawhon was recently featured in a heartbreaking image with her grandfather, who suffers from both ALS and bone marrow cancer. The grandfather, 49-year-old Sean Peterson, was pictured sitting with his granddaughter as she lay unconscious in her hospital bed.
Braylynn’s grandmother Beth Peterson-Hickman said Sean “just started falling apart,” when he saw the little girl in such tremendous pain and suffering. “They wheeled him in to see Braylynn. He can no longer speak, he can’t move his hands and he has a feeding tube,” Peterson-Hickman, Braylynn’s grandmother and Peterson’s ex-wife, told PEOPLE.
“When he saw her, he was crying and it was heart-wrenching. I broke down and I had to turn around.”
“He does not deserve this. He, like me, we’re supposed to watch our grandkids grow up and make us great-grandparents,” Peterson-Hickman added.
Braylynn’s mother Ally said that she could have never imagined the reach that this devastating picture would achieve. “I had no intention of that picture getting as far as it did,” said Parker, as reported by TODAY. “I had taken it just to capture a memory — to remind myself that this was real and it was happening.”
"And though she be but little, she is fierce." Our sweet Braylynn, our warrior princess, earned her sparkly pink angel…
Braylynn’s family has received a huge outpouring of support since her diagnosis.
“Braylynn and our family can feel your love and prayers coming in from all over the world. At this time, we want to spend every moment with our precious warrior princess,” the family posted on Facebook before she died.
“Thank you for your love and prayers for our sweet baby girl. We feel them! We know our amazing Battalion of warriors are standing strong behind Braylynn as she fights against the most deadly form of childhood cancer. We need the world to know the cruelty of DIPG. The lack of research, treatment and funding for childhood cancer is absolutely appalling. We will not go away. We need Braylynn’s Battalion of warriors to continue this fight so that someday this will stop happening.”
“This should never happen to anyone. There is no one in this world who is evil enough to deserve to feel what I am currently feeling. My baby girl deserves to live a full, happy life, and so does every other child who has had to face DIPG,” Ally wrote on Facebook.
So what is DIPG?
“DIPG is a type of high grade brain tumour. High grade brain tumours tend to grow quickly and are more likely to spread to other parts of the brain or spinal cord. They are sometimes referred to as being ‘malignant’ or ‘cancerous,'” according to The Brain Tumor Charity.
“DIPGs originate in an area of the brain, and more specifically the brainstem, called the pons. The pons is an area deep within the lower part of the brain which is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure.”
Braylynn reportedly developed a lazy eye in November 2017 as was quickly diagnosed with DIPG. But her health deteriorated rapidly, and in January 2018 she was rushed to hospital. Mother Ally told TODAY that there was some confusion over her daughter’s prognosis.
“We were told (the first night in the hospital) that she had between 24 and 48 hours,” Parker explained. “The doctor who gave us that time frame came in later and told us she lifted the frame because she believed Braylynn could be fighting for several more weeks, even years.”
According to the Michael Mosier Defeat DIPG Foundation, just 10% of children diagnosed with DIPG survive for two years following their diagnosis. Shockingly, less than 1% survive for five years. The average survival time for children diagnosed with the disease is just nine months from diagnosis.
Braylynn survived only a few weeks after her diagnosis, losing her battle with the aggressive form of brain cancer on January 15, 2018.
“She could light up any room,” Ally said of her daughter. “She was a princess with the strength of a warrior and she will never be forgotten.”
Ally’s sister Shawnon had set up a GoFundMe campaign for Ally to help finance complex surgery to remove the tumor.
“There is a surgeon in North Carolina that has successfully operated on this kind of tumor before and has had great outcomes. We are raising funds to get Braylynn, my sister, her husband, and her seven year old daughter to this doctor and to have this surgery,” they wrote at the time.
“They need help with travelling expenses, shelter, every day needs such as food, and most importantly, the surgery. Every dollar helps no matter how big or small. The worst thought for a parent is burying their child. Please help us in our fight to keep that from happening.”
Tragically, they then had to update the page to let supporters know of Braylynn’s passing.
“It is with a heavy heart to say our Princess has left us. We lost our beloved Braylynn on Monday to this treacherous disease that needs to be eradicated. The donations will go to planning her funeral and to other families fighting this disease and some of it will be going to research to help find a cure,” the page read.
“We do not wish this pain upon anyone. We may not be able to bring her back, but she may be able to help other babies from dying in the future. Thank you everyone for your thoughts and prayers.”
Messages of support and condolence have been pouring in. “I am so sorry for your loss, prayers for God’s comfort,” one person wrote on the campaign page. “1 Thesssalonians 4:16 For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. May god be with you in these difficult times, I will pray for your family,” another added.
“God surely received a lovely little angel in his kingdom today. I am so sorry for your loss, I will continue to pray for a cure in your daughters name.”