So, I never imagined my first blog post of 2017 would be on a topic such as this. As much as I want to stick to a travel theme, I became infatuated with the want to write about this family and it’s a topic that has suddenly become really important to me.
My family Christmas morning has remained the same since I was old enough to open presents by myself. Me and my brother have separate piles on each side of the living room, with a tangerine at the bottom and some form of teddy sat unwrapped at the top. This year, I came to find the most gorgeous knitted elephant wearing a ballerina outfit on top of my pile, with a paper tag around its neck. My mum immediately stopped to tell me there was a story behind this teddy and If you know me well, you will know I’m a complete sucker for sentimentality.
To briefly explain, my mum is a member of a Samba/African drumming band. I know, she’s the coolest. In the band, there is also a lovely lady named Carol, who has a great granddaughter called Clara Walsh, who was born with the syndrome ‘Smith Lemli Opitz’ (SLOS). She is one of 800 in the world to inherit it. Squishing a huge description that will come later, into one sentence…from what understanding I have of it, is that it’s an inherited disease that dramatically slows down your Cholesterol metabolism, if both parents have a fault in their genes.
Because the syndrome is so unique to the individual, treatments aren’t that easy to come by. Her family have been given the option to take Clara to America to undergo specific treatments and therapies that will give her a better chance to develop and grow, as there are no specialists in the UK. But, of course, this comes with an expense.
Clara’s family are doing everything they can to fundraise this trip and are doing so well currently on their ‘Just giving’!
And as you can probably guess by now, one of the ways her great grandmother Carol is raising money, is by knitting and selling on custom kitted items. I’m sure that it’s not just my heart that explodes on this thought. After I was told this by my mum, I suddenly had this overwhelming urge to thank Carol, not only for my Elephant but for allowing me to now recognise this syndrome. I wanted to use this platform as a way to enlighten others about it, because what’s the harm in knowing what’s out there?
I had the opportunity to speak to Clara’s mum, Sara, who was so amazing in helping me try to explain this syndrome in a way that doesn’t jam pack this post full of massive words that overwhelm you. She told me that “The scary thing is we didn’t know anything about her syndrome until she was 7 months old and had no warnings of this while pregnant, both me and dad are completely healthy”. Clara wasn’t even on the SLOS growth chart until she was 1 year old.
From the lack of Cholesterol production, SLOS can cause a stunted speed of growth mentally and physically, in Clara’s case her family was told she may never walk or talk. As well as malformations within most organs in the body, it can cause disfigurements such as having eyes further apart, a small lower jaw, webbed toes or fingers, cleft palate or cleft palate and lip. Clara, has ended up with all of these.
However; the little star is making monumental progress every day. Sara has told me all about how much of a trooper she is. She loves to giggle, smile and cuddle. She’s grown so much of the past year and has even pushed herself to be able to say ‘mama’, even though that was meant to be completely off the cards!
In an email, Sara said to me “Who knows what the future holds, we just push her as much as we can to give her the best chance we can to do what she can.” And I think that is so inspiring. It inspires me to push myself harder in everything I do, just because of how blumin’ hard this tiny baby is pushing herself for a better chance to stay alive. We guiltily do take for granted how healthy we are, how intelligent we are. Clara is a true demonstration of strength, as well as her phenomenal family.
I won’t beg for donations as this is not what this post is intended to do, BUT their just giving page is strewn throughout this post and right below! *wink wink*
Clara’s just giving page
If you made it to the end of this, thank you! To Clara’s family and the little lady herself, thank you for motivating me through my every day.