Rare diseases can be very challenging for children and their families. Unfortunately, there are many children all over the world who are affected by rare diseases and are given only the privilege of living a tragically short life.
This boy named Marshall was also one of those kids whose story sticks with you and makes you wish things had turned out differently.
After just 18 months, Marshall had been robbed of his eyesight, as well as his ability to move freely and communicate. More than anything, though, the boy who once lived to run and play outside had been robbed of his childhood.
He began suffering from seizures and tremors, which left Marshall completely unable to feed himself, and prone to falls.
Elsie, Marshall’s grandmother, is a trained nurse. She cared for the boy at her home throughout the final three years of his unimaginably short life. Marshall suffered tremendously, and it was difficult to watch, but Elsie says that “his determination and his happiness through it all have just amazed me.”
Watching Marshall’s disorder progress was heartbreaking for the family to endure, but through it all, they got to see incredible strength and resilience from one very positive little boy.
“When he lost the ability to walk, he learned to crawl,” Elsie explained. “When he struggled to feed himself using a knife and fork, he swapped his cutlery for two forks and would eat one mouthful at a time. And even when he was bed-bound, unable to move or talk, he continued to smile.”
Despite his young age, Elsie says that Marshall seemed to find a way to accept his illness. In doing so, she believes he found ways to make the best of his circumstances.
“He took everything this disease threw at him and kept trying. He would drop to the floor about 40 times a day, that’s why he wore a helmet, but he would always get back up. He never complained or got frustrated by it.”
Before Marshall passed away on October 30, Elsie took to Facebook to share a letter she had written on behalf of her grandson.
This will be my last message on here, because by the time you read this, I will be in Heaven. It’s okay because Nana has told me all about it and about all the wonderful things I will be able to do when I am there. There will be loads of slides and strawberries and cupcakes, and I will be able to eat again and watch videos.
I was worried that I would miss the people I love so much and that would make me sad, but Nana told me that the love people have for me is so strong that it will be like they are there with me.
Nana says I have been the bravest boy ever. When Batten disease stopped me from being able to use my iPad, feed myself, or play games, I still kept smiling. I never cried when I kept falling down all the time or when I stopped being able to eat food and had to have it put in a tube in my tummy. Nana says I just accepted everything that happened to me and kept laughing for as long as I was able to. And when I was no longer able to move, talk, or see, I loved listening to Nana read out all the messages my friends had written to me.
You have been with me, supported me, and loved me, and I want to thank you from the bottom of my heart.
But now I have to say goodbye.
Be happy for me that I am no longer trapped in a body that stopped me from enjoying my childhood. I am now free to do all the things I have missed so very much.
Lots and lots of love to you all,
Marshall will be greatly missed by his friends and family. But one thing is certain: he will be remembered for his courage AND joy in the face of such a crippling disease.