May 15th …

May 15th. On this International Day of Families I wanted to share with you all a little bit about my family. May 15th. This is three days before my eldest son turns 16 and it will be two days after his big […]

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For the love of Tuck

I wrote about Tucker before on FamilyFriendlyHQ I am aware that sometimes the things I write are hard to read and that it can leave the reader feeling sad; but when I choose to write about Ethan and his life, I cannot leave […]

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**Guest Post by Sally** #mpsawareness

  In 2015 our family had no idea that May 15th was MPS Awareness Day. We were lucky. Most people have never heard of MPS (mucopolysaccharidosis). Why would they? It is not the rarest of diseases, but rare enough to be described […]

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Dream a little dream …

From the moment we know we are pregnant…we dream. We dream about this little person growing in our bellies. We dream about what they will look like, who’s nose will they have? Who’s hair…who’s mouth…eyes…? We dream as our bellies grow and […]

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Why I no longer pray for a ‘cure’

  I am a parent of a child with a terminal condition called Hunter Syndrome. I no longer pray for a cure. Terminal or life limiting conditions give you a perspective, one that’s different to most and one that you can’t really […]

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ProjectAlive.org

It started with an email. An email asking me to write a blog post for an up and coming fundraising/awareness campaign. As I wrote the blog, tears fell down my face. This was my life. This was my reality, stripped bear for the […]

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