Marshall Clark had lived a normal life for a little boy. He loved to run around and play with his friends, and he was obsessed with everything spider-related and the Toy Story franchise.

Then, in 2013, he was diagnosed with Late Infantile Batten Disease, an incredibly rare (only 24 children in the entire U.K. suffer from the disease) and degenerative disorder of the nervous system.

Within 18 months Marshall lost his vision, mobility, and ability to communicate. He also suffered from night terrors, seizures, and tremors that left him unable to even feed himself.

Through it all, though, the young boy never lost his positivity and determination. His grandmother Elsie, a trained nurse, helped Marshall’s mother care for him, and she was amazed at his incredible attitude throughout the whole thing.

Though the young boy would involuntarily fall up to 40 times a day, Elsie says he never cried or complained or gave up in his determination to forge ahead.

“His determination and his happiness throughout it all has just amazed me,” she said. “When he lost the ability to walk, he learnt to crawl. 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.”

“Marshall took everything in his stride,” she added. “Every time he lost a skill, he would continue as normal. Batten disease is a horrible condition and it’s been an evil journey to go through but he was so, so brave.

“Marshall lost everything within 18 months of the diagnosis but he seemed to just accept it. He never cried. 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.”

Sadly, just days before his eighth birthday, Marshall passed away. As heartbroken as his family is, they know the brave young boy is now free of his earthly pain.

After his passing Elsie wrote a letter in Marshall’s voice to his friends, thanking them for their support and giving them comfort in the face of their loss.

She wrote:

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 run 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 xxxx 

Marshall’s funeral was held on November 8 to coincide with his birthday. It was superhero-themed, more than appropriate for this brave young boy.

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