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Hector’s triumph

We had our son Hector on the 19th May 2023, he was a seemingly healthy baby and we couldn’t have been more smitten with him.… Continue reading Hector’s triumph

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Light of life

Vietnamese version right here, English version is below. Xin chào cả thế giới, Tôi là Đỗ Phước Huy, 30 tuổi, và tôi đến từ Việt… Continue reading Light of life

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Kash- Mr.Drama

Kash and his identical twin King were born at 24weeks on February 25th, 2022 .Our NICU journey was full of uncertainty as the boys struggled… Continue reading Kash- Mr.Drama

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MEN-1 might be rare but hope doesn’t have to be

Sharing my husbands story. My husband is a MEN 1 fighter a long with our daughter who is 6. Brian was diagnosed with MEN-1 at… Continue reading MEN-1 might be rare but hope doesn’t have to be

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My Ataxia journey…

My adventure with this condition began at the age of 16, when I started to lose my balance and got a drunken gait. Over time,… Continue reading My Ataxia journey…

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Zebra Strong

Hi From childhood on, I have been prone to chronic viruses and infections. It takes my body longer to respond to medicine and recover. My… Continue reading Zebra Strong

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West Yorkshire family fight against rare disease

I am based in Skelmanthorpe, with my husband James, and my two children Elijah (4) and Stefan (5 months). I am writing to submit a… Continue reading West Yorkshire family fight against rare disease

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My Summer of Guillain-Barre Syndrome

It all began in the earlier part of June when I was unable to get up from the couch and walk. My husband called 911… Continue reading My Summer of Guillain-Barre Syndrome

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Insights From Moyamoya

Watching the Green Bay Packers on TV is a weekly ritual in my home. But a family tradition was interrupted—and my life after 24 years… Continue reading Insights From Moyamoya

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