Krabbe Disease

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8 Tips for a Grieving Mother, From a Grieving Mother

8 Tips for a Grieving Mother, From a Grieving Mother

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4y

8 Tips for a Grieving Mother, From a Grieving Mother

In March 2019, our family was turned upside down when my youngest succumbed to Krabbe Disease after seven years of fighting. Everything changed, including how we were treated by friends. They didn’t know what to say or do, especially when they were face to face with me, the mother. I can’t say I blame people [...]

Story

How My Son's Nurse Has Become Like Family

How My Son's Nurse Has Become Like Family

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6y

How My Son's Nurse Has Become Like Family

To my son’s nurse, Your main responsibility from 9 a.m. to 5 p.m. is caring for our son. You give meds and food, change diapers, calm him down when everything is just too much for him. You’re so attentive and sweet to him and I can see in my son’s eyes that he loves you [...]

Story

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8y

How I Feel When Other Parents Post About Their Healthy Children

Someone recently asked me a question I thought was worthy of an entire post because it is something I believe needs to be addressed in our culture. I was asked how it makes me feel — given our circumstances with Tori, our terminally-ill baby — when friends post about their healthy children. I paused before answering, but it wasn’t a [...]

Story

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8y

Why We Will Always Smile in Photos With Our Terminally Ill Child

For nearly 11 months and counting, we’ve known that our Tori is dying. Amidst the sorrow we chose early on to love her fiercely and to live while she is with us here on earth. We made the decision to choose joy, and living that out has come easily for the most part. We’ve blogged about all [...]

Story

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9y

Maintaining Your Marriage in the Midst of Suffering

Marriage experts will tell you it’s vitally important to maintain your marriage during the child-raising years because one day, it will be just the two of you again. One day you will need to know how to live with each other and love each other without your children around. My husband, Brennan, and I have [...]

Story

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9y

What a Hike Revealed About Our Journey With Our Son’s Krabbe Disease

Krabbe disease is a progressive genetic and potentially terminal disease that affects the white matter in the brains of children and adults. It robbed our daughter, Mabry Kate, of almost every physical ability she had until it eventually took her life just before she turned 11 months old. Krabbe disease is currently on the newborn screening in only two states, according [...]

Story

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9y

A Lady at the Airport Left Us This Note When We Needed It Most

It was our second time leaving our quiet home in Texas to see the specialist in busy Pittsburgh. We were surprised by how well the first visit had gone — we’d brought family to help us carry bags and for mental support. We felt comfortable going by ourselves this time, just the three of us. It was our [...]

Story

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9y

12 Ways You Can Help a Grieving Parent

I lost my daughter Hannah to Krabbe disease four months ago. She was 23 months old. We spent a stressful two years watching her slowly die. After Hannah passed I had lots of people say to me, “I just don’t know what to say or what to do. How can I help you?” At first [...]

Story

hannah with oxygen tubes

hannah with oxygen tubes

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9y

The Day My Daughter Died Was Both Tragic and Beautiful

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

Story

young boy with red hair

young boy with red hair

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9y

To the Mom Who Hasn't Yet Realized These Are the Best Days of Her Life

You will change drastically over the next few years. You will have future plans all lined out for yourself. Those will end up being pushed further and further back. You thought you’d had your heart broken before. And you did. But this will be the ultimate heartbreak. The one you never can mend. Friends will [...]