Have you heard of “Sturge Weber Syndrome” well I hadn’t either until a friend I went to school shared a Facebook page titled “Ellen Meets Sophia” for her sister. Now I am not one to like a thousand pages, accept the one hundred million game requests I receive each year BUT I was intrigued knowing that her sisters little girl was born unique.
After reading about this amazing and awe-inspiring family I couldn’t but help get on the #Ellenmeetssophia choo choo express and help with the campaign. I’m a mummy too and have don’t my fair share of charity work prior to parenthood. From experience raising awareness is not an easy thing and believe it or not with all the technology at hand it’s hard work. I know the love a parent has for their child so I know I would fiercely do everything in my power to give my child the opportunities and learn as much as I could about such a rare syndrome. After having done my research my heart melted and I was hooked. I didn’t even ask ‘can I help?” it was instinct, I just knew I had to. Straight away I signed up to twitter (like all the kids these days), shared the Facebook page with my friends and made contact with a few old friends. Would you? Could you? Why wouldn’t I, I had nothing but time on my hands.
After following Amanda, Ryan’s and Sophia’s journey through the Ellen meets Sophia Facebook page and after reading part 1 of their story and understanding their aim, I can’t imagine the emotional rollercoaster these guys have been on.
I learnt Sophia’s gender was the only thing they were expecting when she was born but as first time parents they had to endure so much more. After they were told initially the port wine stain on Sophia’s face was bruising it became evident the next morning that it wasn’t bruising but a birth mark which they affectionately call her “beauty mark” (sweetest thing ever). However, it was the severity of what her beauty mark would mean for their family was what they were worried about. Only 12 hours after baby Sophia entered the world a head doctor explained that they had diagnosed their beautiful baby with Klippel-Trenaunay Syndrome and gave a brief explanation and returned shortly with printed information from Dr. Google (very professional) . Now becoming a first time parent is scary enough and you yourself know how scary the unknown is. Can you can imagine all of the emotions that this couple had to endure in the first 24 hours after their little angel’s arrival. After reading this I wish I knew this couple before I jumped on the train just so I could give them a big hug, tell them it was going to be ok. You can imagine it for yourself. Reading over the information from Dr. Google which explained that their precious little girl would have overgrowth of limbs, gigantism, birthmark, possible crushing of internal organs and the like. It most likely had more detail than that but as a first time parent the focus would naturally have been on the scary parts and having a thousand questions about what this diagnosis meant for their family and the future of their precious bundle.
After finally being diagnosed a very rare neurological disorder called Sturge Weber Syndrome Amanda and Ryan could finally understand what this meant. This syndrome doesn’t discriminate and is purely at random. Effects of this syndrome can cause some or all of – mental & developmental delays, glaucoma, a birthmark known as a port wine stain over the face & parts of the body and epilepsy amongst a few other issues (including weakness to the body and behavioural issues to name a few). The syndrome is very complex and no two cases are the same. This family has had to go through so much a mum, a dad, a couple and a family but I’ve never met a family who have SO MUCH LOVE, admiration for their #Queenbee and focused on raising awareness.
Through the Ellen Meets Sophia page they will slowly share their story and journey but for now, I encourage you all to like and share https://www.facebook.com/ellenmeetssophia Facebook page and get on board the train. Spread the word! Amanda and Ryan’s mission at present is to try and get Ellen on board with their awareness campaign for this rare and life changing syndrome. Through pure love and luck they have been given the opportunity to travel to America this year in July, to attend an annual conference on Sturge Weber, thanks to a lovely family whom they have never met whom won a competition with Qantas. They are giving us enough of their points to travel internationally just to pay it forward. Feels like a dream! (Insert tears) We want Ellen to know about these amazing couple who so selflessly share their points, to thank them on a public platform, Raise awareness for SWS and the Sturge Weber conference! And Amanda wants to get down to funky town and have a dance off with Ellen!
I feel it is my responsibility as a mum and a friend to help raise awareness for Sturge Weber Syndrome and get behind #Ellenmeetssophia. Get crazy and share your ideas, share the Facebook with your friends and the world. We want to get this international, we want this viral, and we want Ellen’s attention. Keep your thinking caps on for crazy ideas to get Ellen on board. We know she loves cat photos, knock knock jokes and a good selfie! We are going to try and get on her level the best we can! Together we can do this.
I feel it is my responsibility as a mum and a friend to help raise awareness for Sturge Weber Syndrome and get behind #Ellenmeetssophia campaign. She is a beautiful girl with two parents on a mission and I know for everyone that does get on the train & shares this journey, by spreading the word #Teamsophia thanks you very much.
My question to you is WOULD YOU? COULD YOU? Of course you can CHOO CHOO Sturge Weber isn’t contagious but awareness is

Posted by TBOMB, 19th January 2015

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  • What a lovely thing for you to do. Raising awareness and getting rid of the ignorance surround so many afflictions is the first step. Don’t turn your back or ostracise just because you don’t know or understand. Good for you for helping your friends


  • my twitter is @traceymglass1 :-)


  • hi what is your twitter?


  • Thank you for sharing, I myself am now intrigued. You sound like a wonderful person. I take my hat off to you xx

    • mom62297 im not in it for the glory im in it because in itself its a beautiful story a beautiful little girl and a beautiful cause. I would want everyone on my side if it was little munchkin and our family going on this journey. I encourage you to check out the facebook page and like and share with your friends, and encourage them to like and share. Post a message to Manda and let us know where you are in the world so we know our message is getting out there. The Ellenmeetssophia team is small so we need all the help we can get and if i can i know an amazing person like yourself can because with a team full of amazing people we will achieve amazing things. So from me to you i thank you with all my heart for taking the time to read Amanda, Ryan’s and Sophia’s story and commenting. I have posted over 750 tweets and only received about a dozen retweets so its difficult to know if our message is being heard. ox from queensland australia


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