Four days away from her fifth birthday, Braylynn Lawhon was diagnosed with DIPG. Since then, her mother, Allyn Parker began documenting Braylynn’s journey and her battle with DIPG and shared it on social media to spread awareness.
It is surprising but true that despite the death of hundreds of children every year due to DIPG, the awareness for this glial tumor is scarce. Parker’s efforts, in spite of all the pain she was going through as a mother, made many in the world aware about DIPG.
A photograph that she shared showing Braylynn Lawhon and her crying grandfather next to her had gone viral on the Internet. Her grandfather was diagnosed with bone marrow cancer and ALS – he passed away soon after Braylynn did in January 2018.
Parker wrote in her Facebook post, “We all thought that they would outlive the rest of us…and we certainly never thought that my precious little Braylynn would be the first to go. Last year was hard for us, but I can’t even begin to explain how difficult this year will be and has already been. 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.” The photograph made an impact that no amount of words ever can.
The treatment for the little girl cost about $18000 to be spent every 3-7 weeks. The family had started a GoFundMe page where many people came forward to help. And this is a story similar to what hundreds of families go through every year.
In such a state of shock, Parker had planned a princess-themed funeral for her sweetheart. She knew that the child deserved the best. As she passed through the most difficult phase of her life, she remembered to share her daughter’s story in the hope that no other mother has to go through what she did.
The Marc Jr Foundation is committed to finding a cure for DIPG and saving lives. Your smallest act of support, will mean the world to the families battling DIPG. Let’s make a difference together.
Awareness about the not-much-talked-about Diffuse Intrinsic Pontine Glioma (DIPG) can help in the diagnosis and pain-relieving treatment of the disease. These glial tumors, that are found at the base of the brain are most common in children. A related condition called “hydrocephalus” wherein fluid builds-up in the brain also causes pressure in the brain.
These are the major symptoms of DIPG:
Problems with eye movement, vision, and control:
DIPG occurs in the “pons” of the brainstem, causing pressure on the cranial nerves that originate from that part of our brain. These nerves control the facial muscles that are used to move the eyes. Other symptoms of DIPG related to the eyes are double vision, drooping of the eyelids and inability to completely shut the eyes.
Difficulty in swallowing and chewing:
The cranial nerves that originate from the pons, also control the facial muscles which are used to chew and swallow food. Difficulty in performing these two functions are one of the first red flags.
Problems in balance:
The balance system of the human body works when the inner ear, brain, muscles, joints and the eyes function unimpaired together. DIPG hampers their functioning.
It causes headaches, especially in the morning. As the tumor enlarges, it causes pressure and pain in the brain.
Nausea and vomiting:
Both these symptoms are a result of the increased pressure inside the brain.
Other symptoms like fatigue, anxiety, deafness, difficulty in urinating, problems in walking, weakness in the limbs, clumsiness, difficulty in sleeping are also present. Symptoms can get intense a month before diagnosis but can also appear up to six months before. As DIPG is a rapidly-growing tumor the symptoms can get worse quickly. It is advisable to seek medical help as soon as possible.
The Marc Junior Foundation has been dedicated to spreading awareness about DIPG, funding research for its cure and encouraging the participation of the people in helping those facing DIPG. Join our movement. You can also donate to the cause.