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The Day My Daughter Died Was Both Tragic and Beautiful

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Losing my 23-month-old daughter was a tragic but beautiful day.

hannah with oxygen tubes

My daughter Hannah had Krabbe disease, a rare genetic condition. She was diagnosed at 5 months old. She wasn’t able to eat by mouth, crawl, walk, smile, laugh or at times even breathe. She had 24-hour care that included myself and nurses.

Hannah passed away on December 28, 2014. Her heart just stopped. She was so tired. The last month of her life she struggled. I remember crying every day. All I could do was hold and love her. When her heart stopped, mine kept beating. Why? How is this fair? I kept asking myself. But then I looked down at Hannah. I saw a true angel.

Her dad and I took turns holding her with no tubes. She was just a 23-month-old sleeping in our arms. She wasn’t in pain; she looked so comfortable and at peace. She wasn’t living with a disease. It had left her body. She was dancing away in heaven. I believe I will see her again. Every day I’m one day closer.

My daughter is a hero and a true inspiration to me. She taught me so much in her life — more then I learned in a lifetime. I’m grateful I had the chance to meet her.

hannah laying on the bed

Follow this journey on Hope for Hannah Bear.

The Mighty is asking its readers the following: Describe a memory with a loved one that you didn’t realize meant so much to you until they passed away. If you’d like to participate, please send a blog post to Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Originally published: April 9, 2015
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