Costello Syndrome

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How We Are Hoping to 'Pay it Forward' to Other Rare Families Searching for a Diagnosis

How We Are Hoping to 'Pay it Forward' to Other Rare Families Searching for a Diagnosis

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Costello Syndrome

5y

How We Are Hoping to 'Pay it Forward' to Other Rare Families Searching for a Diagnosis

I still can’t remember the day of Jasper’s birth. It sits, shifty and shaky, in a corner of my mind that I hope will not be disturbed for a very long time. I don’t have the time now to unpack that day, or the days directly after. There’s no room for it. We don’t have [...]

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A Message for the Rare Disorder Trying to Take My Little Brother's Life

A Message for the Rare Disorder Trying to Take My Little Brother's Life

Madison Pawlina

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Costello Syndrome

9y

A Message for the Rare Disorder Trying to Take My Little Brother's Life

D ear Costello syndrome, You’re a wild curse but also a blessing. Only about 200 people on the entire planet have you. Why did you take my brother, Brendan? You’re the reason my family had a larger chance of winning the lottery than him surviving as a child. You’re the reason he didn’t learn to [...]