When he was little, Marshall Clark loved nothing more than to run and play outside, watch his favorite videos, and talk with his friends. He loved going down the slide and eating strawberries and cupcakes.
But for the last three years of his tragically short life, he was unable to do all the things he loved. Clark was diagnosed with a rare nervous system disorder called late infantile Batten disease in 2013. Extremely uncommon, it's a disorder affecting only 24 children in the U.K.
By 2014, the disease robbed Clark of his vision and ability to communicate. He began suffering seizures and tremors that left him unable to feed himself and prone to falling, and it only got worse from there.
His grandmother, Elsie Clark, who is a trained nurse, cared for her grandson at her home and never left his side as his condition worsened.
But as sad as she was to see him struggle and suffer, she was also amazed at how he handled the ordeal.
"His determination and his happiness throughout it all has just amazed me," she said.
Sadly, Marshall Clark passed away at the end of October. In his honor, his grandmother left a beautifully written message from Marshall to his friends and family on her Facebook.
Written from Marshall's point of view, it's a message of hope and comfort to those who grieve his passing. It celebrates how he had resolve, positivity, and enduring happiness well beyond his years.
Writing letters is a way of expressing deep emotions, sometimes ones that can't be let out through spoken word alone, especially for people with disabilities.
Marshall's letter, created with help from his grandmother, is truly touching, as both a comfort to his surviving family and as a memorial to a little boy who didn't let anything get him down.
[H/T: Daily Mail]
Marshall Clark was diagnosed with Batten disease in 2013. Batten disease is a rare, degenerative disorder of the nervous system. It is fatal.
Within 18 months of his diagnosis, Clark lost his vision and ability to move freely, as well as his ability to communicate.
His family — especially his mother, Lara, and his grandmother, Elsie — stayed by his side and helped care for him.
Watching his disorder progress was of course heartbreaking, but they also got to see what a strong, resilient, and positive person Marshall was.
According to Elsie, Marshall never cried, and he never gave up.
"When he lost the ability to walk, he learnt to crawl," she recalls. "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."
Elsie said that Marshall, despite his young age, seemed to have the ability to accept his illness and make the best of it.
"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."
She also commended Lara, Marshall's mother, for managing to care for Marshall while also raising his younger brother, 2-year-old Troy.
Before he passed, Elsie wrote a letter via Facebook to the friends and family who were hoping and praying for Marshall.
She hoped to capture the spirit of her grandson, his resilience, his happiness, and his love.
The letter reads:
Dear friends,
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 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 or 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 move or talk or see, I loved listening to nana read out all the messages my friends wrote to me.
You have been with me and 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, your Marshall
Marshall will be loved and missed by his friends and family, and remembered for his bravery in the face of such a debilitating disease.
If you’d like to help find a cure for Batten disease, you can make a donation on the official foundation website.
Please SHARE if you believe Marshall is now enjoying slides, strawberries, cupcakes, and videos in heaven.
