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A Parent’s Perspective: The Brain Donation Process on Her Son’s Death

As a parent, why was it important to you to donate Mark’s brain for Rett Syndrome research?

When Mark died unexpectedly, I contacted the doctors that I knew who deal with Rett syndrome to let them know of his death. Through this, I was connected with, Dr. Rastegar, who asked if I would be willing to donate Mark’s brain to her lab for study. That was exactly what I was hoping for – some way to contribute to finding a cure for Rett syndrome.

How did the decision to donate make you feel in the moment?

I was in shock and hadn’t preplanned any of this. Trying to solve the who, how, when of making this donation work was extremely hard work and, many times, I was ready to give it up as being impossible. But once we had it figured out, the shock of his death and his and my loss was profound. I think if the Brain Donation Protocol had been in place, I would have been reassured that I had done everything possible and the beginning of my grieving process would have been easier.

How does the decision to donate make you feel today after years have passed?

I would not want any other parent to have to go through what I did when their loved one unexpectedly dies or have them miss the opportunity to make the donation if that is what they wished. I still think I made the right decision and I think Mark would have agreed. Mark’s donation was the best way for me to honor his courage in living his life fully and joyfully. I’m very glad I did it.

What advice would you give families if they are considering donating their child’s brain for research into Rett syndrome? 

Don’t wait until your loved one dies. It will be a moment of profound sadness and not a good time to be making important decisions that need thoughtful consideration. Do the thinking and deciding now. You can always change your mind later. And keep in mind that there are many ways in which a cure or treatment for Rett syndrome may be found. This is only one way – a very personal and unique contribution made by you and your loved one that no one else can do. The donation is as special as your loved one is. I did it to acknowledge and celebrate Mark’s life.

What are your thoughts about O.R.S.A. providing resources/support for families on this sensitive topic?

I think this is what O.R.S.A. does best. O.R.S.A. has created and supported a vibrant community for people living with Rett syndrome and their families. Sharing information and support in difficult times is so necessary given the complexities of living with Rett syndrome. Advanced planning for end-of-life is a necessary step in all of our lives.

As an advocate for brain donation research, why is it important to build a Canadian biobank?

Every bit of new information that researchers gather creates the possibilities of advancements towards a cure. Being able to share this information around the world opens new ideas and potentials amongst researchers everywhere. I think it is the best way to build new understandings of how Rett syndrome affects human bodies.

Discuss your interactions with Dr. Ragestar and her staff.

When I went to Winnipeg for the opening of the Brain Bank, Dr. Ragestar and Dr. Del Bigio were amazing and compassionate hosts. Willing to answer any and all questions, I found them to be very patient and kind. As an example, I had expected to see a freezer full of brains. Of course, that’s not how it works. I do remember asking what happens to my son’s brain tissues after the research has ended. I don’t remember the answer except that it reassured me.