Thoughts and musings from a Dad on Duplication 15Q (IDIC15) and the life as a "chromo family".
Today is rare chromosome awareness day and as it says on the tin, we, as a community and parents of children with rare chromosome disorders, raise awareness of these rare duplications, deletions and variations and celebrate our kids with gusto. It has been a while since I wrote a blog post on here, but the […]
Read More RARE CHROMOSOME AWARENESS DAY 2023Each year, around the middle of June, Unique, a charity supporting families of children with rare chromosome disorders participate in an awareness programme, focused on raising the profile of the charity and the rare disorders they are experts in. This year, due to lockdown, the awareness week appears to be a little scaled back but […]
Read More Unique Lockdown Diaries….(What if?)This Christmas our little dude is six years old, at six, it would be safe to assume he would be excited at the prospect and counting down the days from mid November. On the first day of advent, he would become extra excited as he knew it was getting close to the big day, lists […]
Read More The Complex Simplicity of a Merry AutistmasInfantile spasms! It sounds like something quite gentle, innocuous and all rather insignificant. That was my initial thought when I first read the name of this condition when I Googled Matthew’s symptoms back when he was about eight months old. Then I began to read, as I read I began to realise that the name was somewhat […]
Read More Infantile Spasms Awareness Week 1st – 7th December.David Haye, approximately 1.1million twitter followers, a world famous boxing champion and firmly in the public spotlight, a man who finds it acceptable to use a word which went out with the ark in a pre-bout press conference by calling the baying crowd in Liverpool ” f***ing r****ds”. That word itself is a vile word, a word […]
Read More Big Man With a Big Mouth.“Just like any other toddler” A phrase that often crops up in conversation with others and we talk about Matthew, his progress and the behaviour he exhibits. I guess a lot of it is not knowing what to say, an awkward embarrassment or possibly an attempt at empathy as we explain his needs, his day to day, the […]
Read More Just like any other toddler….Happy birthday to this kid! This kid, who will wake up this birthday turning three years old, yet will be oblivious to the pile of presents and that await him. It is likely he will leave them untouched and wrapped, unaware of their significance and the significance of the day, yet we hold hope that […]
Read More Happy Birthday to This Kid…A Dad’s View of 15Q – An insight to the first 2 years of a “Chromo Parent”, by Ian Hill. Chromosome disorders and their diagnosis on your child are a lonely and isolating event, as a Dad you must stay strong, keep it together, maintain that stiff upper lip and keep the ship steady, or […]
Read More A Dad’s View of 15Q (Article with illustrations also available on this blog)
A Dads View of 15q 