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, Marshall lost his vision and ability to move freely, as well as his ability to communicate.
Things were not going well for poor Marshall…
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.
“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. xxxx”
Marshall will be loved and missed by his friends and family, and remembered for his bravery in the face of such a debilitating disease.
I have no words to express how much I admire Marshall’s bravery in the face of his illness, as well as his love to his family and friends to help them grieve and give them a much needed sense of comfort and peace. What an amazing young man.
If you’d like to help find a cure for Batten disease, you can make a donation on the official foundation website.
