Letter from a father, living with MS

Dear Amelia,

A few months ago, you wrote me a letter – a letter about what it feels like to be my caregiver and to have a father who lives with multiple sclerosis.

Well, today is Father’s Day, and I can think of no better day than to respond to your heartfelt words.

It was 2008 when I was first diagnosed with MS. You were only eight years old.

In my case, it was a severe relapse. MS attacked my voice box and I had completely lost the use of my legs. I couldn’t speak. I couldn’t move. I didn’t know what to do.

You arrived at the hospital with your mother. I remember you being so young, and yet so resilient. At age eight, the doctor was explaining my diagnosis to you, and there you were, listening and learning about the chronic disease for the first time.

The diagnosis was tough. It hindered me from returning to work, and eventually, led to me being permanently disabled. That was hard to take. You and your mother wanted me to be the best person I could be, and I was terrified that I had let you down. Thinking back on it now, I can only imagine how difficult it must have been to see me struggle through such a painful time in my life. Nevertheless, you both were so strong and showed me unwavering love and support with every step.

But Amelia, you were never a regular kid. About a year after my diagnosis, you knew that one day, you wanted to help find a cure for MS. From the age of 11 onward, whenever I took you to the doctor’s, I would leave the room so that you could speak to them in “doctor’s terms”. At 13, you were going to the University of Moncton, helping in the MS research department about five times a year. Your mother and I knew there was something very special about you.

This fall you’re headed to the University of Ottawa to study Biomedical Science and pursue your dream of becoming a neuroscientist. But for me, it doesn’t matter what you do – I’m already so proud of the woman you’ve become. You’re passionate about what you want to do, and if anyone is going to find a cure for MS, it’s going to be you. Or at least you’re going to help. The fact that you are trying to make it easier for my friends out there with MS, and for me, is already an achievement.

As a father, I never wanted to see your childhood be interrupted in any way because I am sick, so I did everything I could to keep things normal. This debilitating disease tries to chip away at you. You have seen me down and out, bedridden and in pain, but I always tried my best to bite my tongue and not let it get in the way of our relationship. I know it wasn’t always easy, but I hope it was enough. Every day, I would pick you up from school and my goal during our four-minute drive home, was to make you laugh or smile. I would do anything to accomplish that. I’m hoping that next year, when you’re away at university, these simple things I did will carry on with you.

In life, because of you, and because I’m a father, my goal has always been to make others happy. I take care of my friends in the MS community and make sure they have smiles on their faces, and I have you to thank as my inspiration.

If there’s one thing I can say to other parents living with MS, it’s to never give up. When I was diagnosed, they told me what the disease was, and said, “Don’t think too deep into it. Don’t scare yourself. Try to live life as if there’s nothing wrong.” But we all know that’s not true. MS has many hardships and I am only here today because I refused to give up.

So, my advice is to do whatever it takes, but never give up – because of all the Amelia Russell’s out there, and the Jane’s, the Johnny’s, the Sally’s. If you give up on yourself, you are giving up on those who love you. Put your best foot forward, because in turn, they are going to put their best foot forward and give everything back.

You’re going to do great things Amelia. Your compassion has no limits, and I know you will use it as a driving force for your career and your life.

I love you and want you to know that I am so proud of you. You’re the best daughter a father could ask for.



  1. Maureen says:

    Thanks for sharing your story.

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