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In Loving Memory

Tavi passed away from complications of SDS and stem cell transplant surrounded by her loving family.

Her mother Allison, shares some beautiful words about grief on this Rare Disease Day:

"Grief is so hard to wrap your head around. At least it is for me.

There are so many days that I am so happy, content and grateful for my life. There are a few days-usually birthdays, memories of events that happened on that day and of course her death that just hit you like a ton of bricks. But then there are days like tomorrow where it sneaks up on me that just overwhelms me. It is Rare Disease Day, a day to support and remember our rare disease warriors- but to me it is so much more than that.

It is a day I had never heard of 8 short years ago. Yes, I knew there were rare diseases. Our sweet niece had a rare disease. But never in a million years did I ever imagine it would be something that would change our lives.

And now it defines our family. Our children. And especially our Tavi.

I often think about losing Joey- should we have pushed more to find out what happened to him? Would we have discovered then that we were carriers of a rare disease and could’ve prevented our future children from having it?

These are questions that I will never have answers for.

And that is hard.

The kids and I looked at pictures of Tavi, talked about her, looked at her clothes and her blanket that I keep in my nightstand- we cried. It is so hard to try to understand why this disease came into our lives and took away our children. And to try to explain this to Anika and Dresden is impossible. All we can do is continue to talk about her. Share her short life and spread awareness.

I am sad, especially tonight.

I miss her sweet face, her fighting spirit and the love that we shared.

Love never dies, but a part of me continues to die each day without her.

It still just feels like such a dream- but it is my reality and I have to continue to learn how to navigate through my life without her.

I will be ok. I am surrounded by so much support, love and strength. And I appreciate more than anyone will ever understand that I can talk about her openly and share my feelings.

But grief is hard.

It is so so hard.

Hope to see you in my dreams tonight, my sweet girl.


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