Glasgow baby photographer // Rare Disease Day 2017

Did you know that today (28th February) is rare disease day?! Do you even know what rare disease day is? Well in our house every day is rare disease day!!! The purpose of this day is to raise awareness of rare diseases so i thought id give you a little insight into our lives and how living with a rare disease helped me realise my dream of becoming a photographer.

So lets go back 6 years........

On the 8th of February 2011 we welcomed the most amazing most beautiful wee boy into our family. He was our third (and last!!!!) son. We called him Logan Ben Brodie (his big brothers each chose a name for him) and he was just amazing!! He settled into our family and things plodded along well.

Logan was a little bit slower than his brothers to reach his milestones but we weren't overly concerned. He had some health problems but nothing major at this point. When he was around 15 months (and still not walking) he was seen by a neurologist (he'd been having little absence seizures and they just wanted to keep an eye one him) and he was a little concerned about some of his behaviours. Our eldest has autism so he asked his paediatrician to maybe look into this further.

After seeing the paediatrician Logan was sent to see a geneticist. He had some blood testing and we waited..........and waited.....for what seemed like an eternity!! Then the call came! Could we go and see the geneticist. He was diagnosed with chromosome 15q11.1 - 11.2 deletion syndrome (sometimes referred to as Burnside Butler syndrome. A rare disease where part of chromosome 15 is missing. My husband and i were both tested to see if either of us had passed on the gene but neither of us did......this is what's known as denovo. It was just one of those things!

Now at the time when we found out all of this i was working as a child development officer in the most fabulous nursery in all of Glasgow! (and I'm genuinely not lying!) The girls (and boys!) i worked with were fabulous but i hated letting them down all the time. There were genetics appointments, physiotherapy appointments, paediatrician appointments, orthotics appointments speech therapy appointments then we also had to see specialists for his eyes and ears! I hated having to ask for time off work all the time. Don't get me wrong my boss was so understanding but i just felt so guilty all the time!

The breaking point.....or turning point as it may well have been was when Logan fractured his femur in the summer of 2014. He was in a hip to toe cast for 12 weeks but he was extremely lucky! Had the break been 2cms lower he would have needed traction! Now as it was i had had the whole summer holidays off with the boys but now i'd need another 12 weeks off as he couldn't go to nursery. No boss is that understanding and i wasn't prepared to even ask her to be! So i handed in my notice. I was absolutely gutted! My boys needed me though and they are more important than any job!

But what would i do with myself when Logan was out of his cast? I had dabbled in photography doing wee shoots here and there and newborns were definitely my passion. If i wanted to do this now was the time!! I could work around my family. I could do this! I wanted to do this!

And so thats pretty much where it all began!!

Yes there have been many many hurdles in our path and yes there will be many more in the future. The truth is there is so little known about Logan's deletion that we have no idea what the future will hold for him! There are only 2 other people in the UK with the same condition as his so we cannot even tell how others have been affected by it. We just have to take each day as it comes.

Yes there may well be days when he's full of meltdowns, pain and anxiety but there's also days when he is the most happiest most loving little fellow in all of the world.

Would we change anything about Logan? Not a single bit! i just hope the world can change for Logan and be more accepting and understanding of people with invisible illnesses. Having said that i'd also take away all the pain he faces pretty much every other day!

So there you have it!!! Rare Diseases are not nice but you have to make the best of a bad situation and thats exactly how its been for our wee family. A blessing in disguise i guess you could say :)

Happy Rare Disease Day everyone xxxx