On this special edition of Birthday Week, we feature Miah, diagnosed with pilocytic astrocytoma, a type of brain cancer, who just celebrated her 8th birthday. After a special request made by her mother Stephanie, Casey Cares was able to coordinate with a local Chuck E. Cheese and Manager Timothy M. to donate a birthday party for her at the establishment. Miah had celebrated her 7th birthday at the establishment before she received her cancer diagnosis.
“Miah’s 8th birthday is so absolutely special to our family because it is a birthday that we feared we may not get to celebrate. Miah is a brain cancer warrior and was so excited to celebrate her big day with her friends and family,” her mother, Stephanie, says.
As put by Miah herself, she said her party "was the best day of her life!"
To this day after joining Casey Cares in March 2023, Miah also loved visiting Ocean Breeze Water Park.
Stephanie states, “We had an awesome time…[and] Miah announced that she did not want to leave. That is Miah’s heart and soul in the summer here.”
The mother appreciates that Casey Cares, “is true to its name! [The foundation] truly does care and for not only our children with special needs but for the entire family!”
In late January 2023, Miah was diagnosed with a large low-grade glioma located deep in the thalamus section of her brain.
Miah’s tumor was first discovered after was initially seen by a doctor for what had appeared to be a sprained wrist or possible fracture. The young girl had difficulty opening her hand and extending her fingers from a balled position.
The family then was admitted through the emergency department for Miah to have an MRI as her doctor saw nothing on an x-ray that would have suggested a fracture or explanation for her symptoms.
Stephanie states, “During the MRI, the technician stopped and asked if they could administer dye, I knew right then that they had found something as dye was not ordered prior to the MRI. Our lives changed forever that day, we were told that they found a very large mass deep in our daughter’s brain and had to be sent immediately to a neurosurgeon.”
She continues, “Miah had a biopsy within days of discovery and upon pathology results Miah was placed on chemotherapy as her tumor was too large to resect. She was able to withstand only a few months of weekly chemotherapy before she began to show symptoms of toxicity and intolerance.”
From there, Miah received a change in her treatment plan.
“[It was] supposed to be much more mild and highly tolerated for the vast majority of children, however after only two infusions Miah showed signs of intolerance to that specific treatment as well,” Stephanie notes.
Her treatment plan changed again, Stephanie adds, “after her intolerances to chemotherapy to a new FDA approved clinical study drug called Koselugo/Selumetinib which is a targeted therapy drug that targets specific proteins in the tumor’s genetic mutations.”
“Miah’s scans showed that her tumor has changed from a very large majority solid tumor to a still very large but majority cystic tumor which in brain tumor terms is very good news,” the mother states.
Today, Miah is doing great and has even been able to return to school.
Stephanie concludes, “Miah is the sweetest girl in the whole world, she has often brought random kids home for dinner and declared that they were best friends on their very first interactions. She loves to sing and dance, and make everyone laugh. She has been our shining light though her entire journey. She was severely neutropenic throughout summer and managed to uplift our family with her absolute angelic spirit even on her worst days. She has embraced bald is beautiful and wears her bald with pride! She has shown us what true love and what true warrior spirit looks like.”
Casey Cares knows that for a critically ill child, each birthday is a special milestone celebrating life. For the children in our programs, it not only marks another year, but it also demonstrates a great achievement. Casey Cares staff and volunteers work hard to send out each of our kids a special birthday package through our Birthday Blasts program - we send over 1,000 a year. This simple act of kindness delivers joy and hope to our kids who are undergoing treatment.
Since Casey Cares began counting in 2001, Casey Cares has given over 10,000 birthday packages to kids.
“Our birthday program is especially important to us because we know how critical each birthday is to children who are fighting for their lives every day,” said Casey Cares founder and executive director Casey Baynes.
You can help bring lasting memories to critically ill children like Miah - click here!
