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5 Things I Wish I Knew About Parenting a Child With a Rare Disease

5 Things I Wish I Knew About Parenting a Child With a Rare Disease

Kassondra Lambert

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5 Things I Wish I Knew About Parenting a Child With a Rare Disease

Last year, I found myself emotionally and physically isolated as the primary caretaker of my son. In caring for him, I lost track of the things I should have been doing to take myself. But, through enduring this, I gained some perspective and learned some lessons about what we can expect to go through as [...]

Story

A scientist injecting something into a test tube

A scientist injecting something into a test tube

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3y

The Industry Response to COVID-19 Is a Blueprint for Accelerating Rare Disease Treatments

On February 28, I stood on a crowded line waiting to pass through the Canadian border checkpoint at Montreal’s Trudeau Airport. Ordinarily I would have balked when an agent stopped to spray sanitizer on the hands of every passing traveler. Any other day I probably would have paused with concern when I saw border agents [...]

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KIF1ADisorder 4y

Powerful representation on PBS

#KIF1ADisorder
I read The Gene as soon as it was published, desperate to understand how a single, random mutation could so cruelly limit my son’s life. Seeing the story of Susannah and her parents, Dr., and this community featured in the PBS documentary adaptation has been so powerful. We see our family in yours. Thank you for sharing your story.

2 reactions • 1 comment

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KIF1ADisorder 4y

Evacuation Drills are Terrifying for Some Kids

Our #KIF1ADisorder kindergartner has an evacuation drill in a new, crowded public school. Bright flashing lights cause seizures, loud noises and crowds terrify her, and high stress situations don’t work for her. She’s resilient though. #RareDisease families have enough to deal with without worrying about school shootings and evacuations.

She’s gonna rock this.

1 reaction • 1 comment

Story

Luke's family

Luke's family

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4y

The Day I Chose Vulnerability When Asking for Help to Save the Lives of Our ‘Rare’ Kids

Before all this happened, I wrote plays. Before Susannah was diagnosed with a rare neurodegenerative disease; before we started the foundation; before I knew about motor proteins and phenotypes; before being thrown into the world of disability; before rare disease policy; before biotech. Before that moment in the hospital elevator when everything changed, one of [...]

Story

Mother touching daughter's nose.

Mother touching daughter's nose.

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6y

Why I Won't Say I 'Believe' in a Cure for My Child

I was recently asked if I was confident that a cure for KIF1A would be found — and the way in which I was asked was very nearly a rhetorical question. “And you believe that a cure will be found, yes?” My answer, though, was not automatic. An enthusiastic “Yes, of course!” did not spring [...]

Story

Doctors and businesswoman standing in elevator in hospital

Doctors and businesswoman standing in elevator in hospital

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6y

Why the Right Doctor Matters When You or Your Family Is Rare

A few months ago I was invited to speak to a group of medical students about KIF1A and how our daughter was finally diagnosed with such a rare condition. We spoke about the difficulty of accessing appropriate genetic testing, and the delay in receiving results. A student asked me if we had a positive experience [...]

Story

What It's Like to Worry for Your Child's Safety With a Rare Disease

What It's Like to Worry for Your Child's Safety With a Rare Disease

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6y

What It's Like to Worry for Your Child's Safety With a Rare Disease

Keeping our kids safe is every parent’s number one job. Even as an adult I associate protection and safety with my childhood home and my loving parents. It’s a great relief when our children finally learn where to go and who to find when they’re in danger. More than a relief, it’s a proud parental [...]