A daddy’s voice – Anthony Woods

A dad losing his baby girl to a rare disease. I was asked to write a piece for rare disease day from a dads perspective. I could have written a book but here is a short piece of my life with a […]

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Does that seem fair to you?

  My son was diagnosed with a life limiting condition, called Hunter Syndrome back in 2008. Our lives changed forever. It was a long journey from Ethan’s birth to his diagnosis …five years and ten months to be exact. In 2008, we […]

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Oh sweet mother F’in – it’s Miss Pig

Dear Miss Pig, The 31st of May 2004, you and your family burst onto my TV screen. At first I thought- ‘Ahh, aren’t you cute with your little posh English accent’. I didn’t give you much more thought until my eldest and […]

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What is Neurofibromatosis type 1? By Miriam Gwynne

Just another disease you had never heard of? My son has a rare disease. A rare disease is defined as a condition that affects less than 5 in 10,000 of the population. His condition actually affects 1 in about 3,000 people meaning […]

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What to say when I tell you about Ethan

It isn’t easy for me to say it; my hearts beats a little faster each and every time I’m asked. I take a second to think is there a better way to say it? I take a deep breath. I see that […]

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One Of These Is Not The Same, Or Is She?- Wendy Ferguson(Guest Writer)

One of these is not the same. Can you tell which one? They are all sweet little girls, happy, bright-eyed, full of love, full of hope and have a lifetime of memories to make. They are the same, right? Well, not exactly […]

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Rare…or could it be rarely diagnosed ? By Melanie Gomez

When my second baby was just a few weeks old, he seemed different than his brother before him. I made mention to the pediatrician, and she sent me back home and scolded me for comparison “no two babies are alike”. Those weekly […]

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Rare Disease Day- Guest post by Sally Mitcham

Rare diseases aren’t that rare. Really? Sounds a bit contradictory, doesn’t it? Rare means that it’s very unlikely that we’ll ever have to worry about it, right? Well, only partly right. There are over 6000 rare diseases, and 1 in 17 people […]

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Rare Disease Day 2016

The last day of February is and has been Rare Disease Day (in Ireland) since 2008. That is the same year Ethan was diagnosed with a rare disease called Hunter Syndrome. It is estimated that there are over 6000 identified rare diseases […]

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Guilt

It resides inside me, waiting for any opportunity to rush through my body, pull at my heart and burn my soul… My toddlers ‘go to’ response is to hit when he is told ‘no’. Is it because I haven’t explained enough to […]

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