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.
“Science knows no country, because knowledge belongs to humanity, and is the torch which illuminates the world,” said Louis Pasteur whose discoveries has saved the lives of many people.
Today, even though we are moving forward technologically at the speed of light, we still have a very long way to go. Finding a cure and researching better treatments for DIPG is the need of the hour. As many researchers and good-hearted Samaritans are doing their best to find a cure for DIPG, a team of scientists has found a new way to treat it in the study named, “Recombinant Attenuated Poliovirus Immunization Vectors Targeting H3.3 K27M in DIPG.”
A team of researchers at Duke University in North Carolina, led by Dr. David Ashley have developed an immunotherapy treatment that could be used in the future to treat DIPG. The study that began in 2017, targets the H3.3 K27M mutation in DIPG by modifying the poliovirus. This mutation is found in 80% of the DIPG tumors.
If successful, the scientists plan to use this treatment as a vaccine through injection into a muscle to trigger immune responses towards the mutant H3.3 K27M gene. This mutation is also present in other high-grade childhood tumors.
The efforts of these researchers were featured on two segments in CBS’ 60 Seconds. Dr. David Ashley who is the Director of Preston Robert Tisch Brain Tumour Centre was awarded a research grant due to the combined efforts of ChadTough Foundation and Michael Mosier Defeat DIPG Foundation. More than 3 million dollars were required for researching this one method alone. Imagine the amount of money that would be required for multiple research methods and ultimately to find a cure for DIPG. Only through our joint, consistent efforts, we will be able to say goodbye to DIPG and give the gift of life to children.
Join Marc Jr Foundation’s efforts to raising awareness about DIPG and finding a cure for it.
Diffuse Intrinsic Pontine Glioma (DIPG), is a type of a brain tumor that majorly affects children below the age of ten. This aggressive brain tumor that spreads quickly has no cure. Radiation treatment only temporarily helps alleviate the symptoms. Just like we don’t have answers on how to cure it, we don’t exactly know what causes DIPG. Finding the cause will advance our efforts in finding the cure.
Some cancers are caused due to environmental factors like exposure to radiation or smoking while others are caused because of inherited genes. In the case of DIPG, there is no evidence that supports these two causes.
According to studies, DIPG formation may be linked to the development of the brain. Certain cells in the brain are present in a higher concentration in the development stages. Research suggests that these cells are responsible for causing DIPG. As we mentioned before, DIPG affects children and this could be the answer to why.
Furthermore, scientists who have studied DIPG, have identified the epigenetic and genetic mutation in the pons. When cells, that use DNA to create new cells or to carry out various functions in the body, are unable to do so because the DNA becomes damaged, it is called genetic mutation. These mutated cells are why cancers are caused. Through genetic sequencing, researchers have learned more about the exact genetic mutations that cause DIPG. More studies are underway.
Dr. Eric Raabe, at John Hopkins University, is studying the effect of this genetic mutation on the formation of DIPG. He has found in DIPG, the cancerous cells multiply more than necessary which makes the tumor grow quickly. Through his reach, Dr. Raabe found that the overactive behavior of an enzyme called TET causes the cancer cells to multiply more than necessary. This may be the cause and targetting the enzyme may help in finding a cure.
Join Marc Jr Foundation’s efforts to spread awareness about DIPG and fund research to find a cure for it. So that the next time, when we talk about DIPG, we can talk about DIPG survivors.