Eli’s sidekick, Ella Rose
As I have stated before, it has been the best season watching the Rams play basketball. It has been great for Hut and I and of course Eli, but it has also been a great experience for Ella as well and I am so proud of her.
Ella sometimes feels lost or unseen (in her words). I can only imagine how hard her life can be at times, between friends, or lack there of, and Eli overshadowing her due to his more complex life and needs. Although we often try to get her to express what she wants or needs, “whatever Eli wants” is what typically comes out of her mouth. If you know her, then you have been witness to this. Yes, it’s sweet but I want Ella to know who she is without it being attached to Eli. More than that, I want her to know just how special SHE is on her own.
Normally, Ella has not much interest in going to games and watching basketball, but this year we have watched her grow leaps and bounds in many ways. A season that started with us not going to the first couple games ended with Ella and I feeling like we are ALL a part of this team in our own way.
Many people know who Eli is, it’s easy to remember him. From his unique walk with his walker to his unforgettable off the cuff personality. He lives in the moment and brings joy to those he comes across. He doesn’t worry too much about what others think of him, and he is super easy to be around,… unless he is watching Philadelphia sports or WWE that is not going his way!
Ella on the other hand, is a bit more reserved, very aware of herself and what she says and thinking TOO much about others. When we would go to games, she would watch people know who Eli, give him a fist bump, or a friendly hello. As much as there were moments that she would get bothered by the lack of attention on her end, she learned something that is invaluable. They are not the same person, and they have different interests, different weakness and strengths. She learned that things are not always going to be about BOTH of them, and she learned to root Eli on without expectations of it being about her.
Ella would wait after almost every game to give the boys five to tell them “great game” she got to see the excitement of the locker room after a great win and she grew to love watching the boys for many reasons;) She learned their names, rooted them on and grew to look forward to the games. She is a teenager so I’m sure seeing the cute boys didn’t hurt either. Ella too, felt like it was her team as well, but in a different way.


About a week ago, Ella wanted to do something for the boys just from her, so she decided to make them all a rainbow loom bracelet in Rams colors. I know this is a pretty easy feat for most, but between misplacing some that she made (a few times)(thanks MLD) her patience, and her fine motor skills, this isn’t always the easiest thing for her. She made them a couple different times and would measure each one on my or her dads wrist to make sure they would be big enough for the boys. She was focused, and so so proud that she could do this by herself without help, just to make the boys smile.

Last night, the basketball team was recognized by the school board for winning the PAC and making it so far in States. Ella counted the minutes until we left for school and she had all her bracelets ready to give out. When she saw the first player, I could see the excitement in her to give him a bracelet. As the boys started coming in, I encouraged her to do this on her own, and go up to each one to hand them out. I saw her smile and she beamed with pride until all but one was left. One young man was missing and she is going to make sure he gets his as well.

Ella and Eli have been through so much together the last 10 years and we are so grateful that they have had each other to save each other. That statement alone gets me every time! They truly saved each other, but I am so grateful that Ella is learning just how important she is aside from being Eli’s MLD partner in crime. To say that I am proud is an understatement. She is fierce, has been from the minute she was born, and my hope is, she can continue to be that way, knowing just how special she is as an individual.

It’s all over for the season, but so many good stories, lessons and joy along the way, for all of us!! Thank you Rams players and coaches for not only bringing Eli on, but for helping Ella to see just how special and unique she is as well!
~ by Rebecca on March 28, 2023.
Posted in Diagnosed, Life after diagnosis, living
Tags: acceptance, basketball, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, ella, Ella Rose, Enjoythemoment, fierce, friends, gene therapy, God, gratitude, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, rainbow loom, Rams, special, special needs, strength, warriors