Ellsy Lupe Raima Marley
6.15.17 - 11.29.23
Diagnosed: May 23, 2023
Ellsy was a very bright, fun, energetic, friendly and Godly girl. She enjoyed going to school, playing with her friends outside, hanging out with her brothers, her church, and her family. She was part of the school choir, and was an exceptionally smart student. Ellsy was the kind of person that would always make sure others felt included. She had a lot of friends was very outgoing. Even throughout her illness, she smiled whenever she went.
A few of Ellsy’s favorite places to go is the beach, she loves playing the water and in the sand, and when the fair time comes around, she loves to go to the fair and look at the animals, the night lights, eat as much fair food as she can get and try all the rides. Ellsy also loves to go to school she says,” that’s where all my friends are and my teaches and it’s fun, I learn and I sing and I play outside”.But one of the most important places that she loves to go to church, because at church that is where there is amazing food, choir where there’s a lot of singing, and a lot of laughter and fun.
Ellsy is a big Disney fan, she will sing along to all the karaoke songs, especially Encanto, Moana and both Frozen movies. She loves going to Chicago and enjoys the train rides, and going to the upper peninsula of Michigan was an highlight of here’s and Disney world! One thing that I remember about, Ellsy is how she prays, and a prayer that I still used to this day is what I learn from her, when it’s time to eat this is how she prays,” Thank you for the world so sweet thank you for the food we eat, thank you Lord for everything. Amen.” She learned this prayer in school and that is one of the things that has stuck with her and now we always stuck with them in my family.
Friends and Family
Ellsy was the youngest of four children. She had two older sisters, Flossy and Loissy, and one older brother, Elldon. Their mother passed away when Ellsy was only six months old, and she was raised by her beloved father. Ellsy was born in America but was a proud Papua New Guinean. There was a big PNG community in and around Berrien County, Michigan, and everyone had a hand in helping her grow, from the moment she was born to the moment she passed.
Ellsy had many friends from church, school, and their little neighborhood; she called almost everyone her best friend. She never hesitated to say hello to anyone she came across. Ellsy was also a big cat and dog person. She had three cats—Rice, Turkey, and Tuna. Tuna, named by Ellsy, was her personal favorite. Ellsy truly had friends of all ages, from little babies to older folks. She had a way with people that brought smiles to their faces and opened up conversations.
Ellsy's Cancer Journey
The first time the family noticed something was a little off with Ellsy was when her pupil started dilating and her responses became delayed. Prior to being diagnosed, Ellsy had an irregular heartbeat and she had to undergo emergency surgery at Bronson Hospital in Kalamazoo Michigan. Afterwards, Ellsy went for regular check ups. That’s when her doctor had noticed a bigger than usual mass in her head. Upon further examination, the family received the devastating news that Ellsy’s tumor was cancerous.
The family had never heard of DIPG before Ellsy’s diagnosis, and it came as a shock to them. She had been just fine a few months before, but as they continued going for checkups and X-rays, they were told about the severity of the situation. From Kalamazoo, they were transferred to the University of Michigan at Mott Children’s Hospital, where Ellsy started her chemotherapy and successfully completed it. However, due to the nature of the cancer, there was no way for the doctors to cure it. They were told to spend as much time with her as they could, and they did.
Their Seventh Day Adventist home church, Living Word Fellowship, and Village Seventh Adventist Church, Ellsy’s school church, and Pioneer Memorial Adventist Church provided prayers and support in many different ways, which was incredibly helpful. Friends and family from the PNG community in America and back home were also very supportive. Additionally, the healthcare specialists, doctors, nurses, and social workers at the University of Michigan Hospital, specifically C. S. Mott Children’s Hospital, were there with them every step of the way. The family is very grateful for them and for the research that they continue to do.
The family learned of this foundation through programs in flyers and on Instagram while looking for other families who had gone through similar experiences. The DIPG team at Mott Children’s Hospital was nothing but helpful and present during their journey.
Ellsy’s story is shared to raise awareness that, although rare, DIPG is still an incurable cancer. The work of this organization is not only helping to find a cure for this cancer but also shedding light on what an amazing individual Ellsy Lupe Raima Marley was. Her older sister, along with her sister Loissy, brother Elldon, and their father, is very honored to have had Ellsy in their lives, and they know their mom would have been super proud of her. The family feels blessed to have been part of all six years of her life, and they know others who came into contact with Ellsy feel the same. Ellsy spent every second of her life to the fullest, and they eagerly await the day they will see her again when Jesus comes.
