MaiysMiracle.org


voluntary donations


Donations are 100% tax exempt and serve to support our efforts to raise DIPG Awareness as well as contribute to DIPG families and DIPG research. Any amount will help and always is greatly appreciated!


 December 11, 2011- April 16, 2014

Maiyanna Marie Antoinette Clemons-McCarthy, with her amazing will and strength was a silent leader who showed everyone that she encountered how to love. Even those who never met her were captivated by her pictures and beautiful spirit. Maiy taught us all to fight gracefully, no matter what we are facing. Her desire and passion for life, friends and family, will continue to inspire everyone who knows her story. Maiy's battle has had a far reaching impact beyond those she has personally encountered. Maiyanna shed a bright light coast to coast as people learned about her fight with DIPG. As a community of people, we will continue to celebrate Maiyanna's life and honor her legacy by displaying genuine love and perseverance through these troubled times.


The Diagnosis

A seemingly healthy child, at 3 years old Maiyanna began losing her balance and having trouble with her eyes in May 2013. On May 19, after admitting to having double vision, her mother raced her to Children's Hospital Pittsburgh, PA. After vigorous tests, five days later an MRI revealed a Diffuse Intrinsic Pontine Glioma. Maiyanna was diagnosed with DIPG, a rare brain tumor that statistically affects less than 200 children and their families in the United States per year. It is a terminal diagnosis, 0% chance of survival and less than 10% of children diagnosed survive more than a year. Maiyanna and her family were sent home with instructions to simply enjoy the days and time left with her.


Maiyanna's Journey

Maiyanna received the typical treatment including 6 weeks of radiation therapy and steroids. Maiy's Miracle Foundation was developed to ensure Maiyanna had the best possible quality of life. A community of family and friends worldwide banned together to support Maiy's Miracle, enabling Maiyanna to change her diet to one of organic cancer fighting foods and supplements as well as two rounds of alternative treatment. Maiyanna lived the life a princess deserved. She traveled throughout the country to Disney World, Disney Land and even got her passport! She crossed the borders into beautiful Tijuana, Mexico and took in every opportunity to make her time left in this current system of things, a very happy one.


On April 16, 2014 Maiyanna fell asleep in death with the resurrection hope. Through her journey, Maiyanna grew a love for Jehovah God and with this she found comfort and encouragement from the scriptures. "He will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore."- Revelation 21:4 

        What is DIPG?

Diffuse Intrinsic Pontine Glioma, is a rare, inoperable, dangerous and extremely aggressive cancerous tumor in the brainstem. Brainstem glioma start in the brain or spinal cord tissue and typically spread throughout the nervous system. Life expectancy is typically a few months after diagnosis. 

Cause

  • The cause is still unknown ("Brainstem Glioma", Wikipedia The Free Encyclopedia, Retrieved Feb .15 2015, from http://en,m.wikipedia.org/wiki/brainstem_glioma) .

Symptoms

  • DIPG tumor affects the cranial nerves which control essential bodily functions. DIPG symptoms include muscle weakness to one side of the body, swallowing and speech problems, crossed eyes, drowsiness, hearing loss and personality changes. 
  • DIPG spares children of their cognitive abilities, allowing them to remain fully aware of their decline, while robbing them of their motor functions resulting in partial paralysis, loss of voice, sight and finally their ability to eat and breathe ("Brain Cancer| DIPG", The Lyla Nsouli Foundation, Retrieved Feb. 15 2015, from http://www.lylansoulfoundation.org/dipg) .

Treatment

  • There is no cure for DIPG and it is very difficult to treat.
  • Treatment includes 6 weeks of radiation therapy, which shrinks tumor and temporarily relieves pressure on the brainstem, improving symptoms for 75% of patients ("Treatment", DIPG Registry, Retrieved Feb. 15 2015, from http://dipgregistry.org/patients-families/treatment/) .

Statistics

  • Unlike many other pediatric cancers, there has been little progress in treatments for DIPG over the last 30 years.
  • DIPG primarily affects children between 5-7 years old. DIPG makes up 10-15% of all pediatric brain tumor.
  • About 100-150 new diagnoses per year in the United States and about 300 per year in all of North America and Europe ("Basic Facts", DIPG Registry, Retrieved Feb. 15 2015, from http://www.dipgregistry.org/patients-families/basic-facts). 
  • Over 90% die within 18 months of diagnosis ("Brain tumor facts", Smiles for Sophie Forever, retrieved Feb. 15, 2015 from http://www.smilesforsophieforever.org).








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