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Breathe and Believe

My name is Jay and I am 33 year old individual diagnosed at birth with an invisible disability known as Congenital Central Hypoventilation Syndrome (CCHS).… Continue reading Breathe and Believe

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Kaylee’s Krusade against IRF2BPL

Kaylee was born in 2013 perfectly healthy and full of the most amazing spirit and personality. She was a free spirit child that loved nature,… Continue reading Kaylee’s Krusade against IRF2BPL

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Living with Milroy’s Disease

I was born on October 21st 1987. To a loving mother & father. The moment I was born the doctors noticed both of my legs,… Continue reading Living with Milroy’s Disease

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My son

My son was born with various problems had times in hospital where doctors baffled to find a cause for his being unwell. Had junior rheumatoid… Continue reading My son

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douleurs comprises

Cela fait de nombreuses années que je souffre et que je n’arrivais plus à faire quelques gestes du quotidien comme me sécher les cheveux avec… Continue reading douleurs comprises

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How I found out about me

My daughter had a fever 40 degree celcium, it repeated several times. After couple years she had herpes in whole body, we go to doctor.… Continue reading How I found out about me

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We hope the life story of our little boy just begins

Maxim was born on August 22, 2021. As parents, we were very happy to meet our little boy.Our son developed according to his age. Every… Continue reading We hope the life story of our little boy just begins

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Our FPIES Journey

My daughter Lily was born January 2024 perfectly healthy. By 4 months old, we started to think something might be wrong. She had concerning diapers… Continue reading Our FPIES Journey

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A story called Atranasferrinemia

Hi everyone,I am Marco, I am 31 years old and since, almost I was born from the age of 2 years old I have lived… Continue reading A story called Atranasferrinemia

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