• Lights, camera, action..

    Our house is official chaos! The fundraising continues and has now raised a massive £36,000. We can’t believe it. Never, ever, expected this! You are all amazing. Here are a few updates from the past two weeks.

    Lynsay!

    My very special friend I met just after my surgery on a SSCD support group. Showing off one of our t shirts all the way in the U.S.A 🙂

    cakes !!

    Amazing Getting Beth Better cakes which were sold at Milford junior School on Friday – they sold over 400 cakes!

    To add to the chaos, I have decided to take part in a new documentary series on rare diseases. So our house has now been taken over by a film crew! It’s been physically exhausting for me, being interviewed and having to do action shots. But it’s been so exciting! I am also happy to be taking part in something which will raise awareness of a condition that is so poorly understood.

    My journey to Boston will be filmed and shown on the documentary which will be aired in October. It’s being filmed by an award winning production company (Tigress Productions) and the director, who is absolutely lovely, has directed One Born Every Minute! (all time favourite) and the assistant director, David, has filmed Embarrassing Bodies and recruited the gang for Geordie Shore! Need I say more? 🙂

    filming 2

    acting!
    Lights, camera, action !

    It’s been hard to keep up with all this excitement. I continue to have good and bad days. I try to look forward to those good days … but the bad ones are physically and emotioanlly draining and can really take their toll on me and my whole family. It’s difficult. But I always try to remind myself that tomorrow is another day … However much I wish I could just take a magic pill to make it all stop, even for just an hour..

    Tom Rye has started his Teach First course (what a clever man), so has moved out. He is back this weekend for the garden party (details here), so I am pretty happy to have him back in the Rye household, causing more chaos!

    me and my bro

    In other news, it’s one week until I fly to the U.S. ! Actually can’t believe we are only a week alway. I am glad the time has gone quickly, I’m more than ready to go now. Yes, I’ve even packed my bag!

    countdown

    A lot of people have been asking what exactly will happen when I get to Boston. So for those of you who are interested, here’s how it goes! Me and my parents arrive Saturday July 11th and will be staying in a hotel just 10 minutes away from the hospital. On Wednesday all the fun begins …. It all starts with testing; hearing and balance tests followed by a CAT scan and MRI. On the Thursday I have an appointment to see Dr Lee (my ENT surgeon)- I actually can’t wait to meet him. I am also so nervous as its all quite unknown. If all goes to plan, my surgery would be on the Friday. So it will happen VERY quickly. Not much time to get nervous or scared about it, and to be honest, none of it feels real yet. Maybe that’s a good thing. I can only focus on where I am now, and of course my first and biggest challenge is getting on the aeroplane…

    Finally! We made it into the local newspaper again this week, very grateful to have so much support from our local community.

    newspaper

    So that’s my random collection of news. I’ll keep this blog as updated as I can while I’m away and there will also be regular updates on our Facebook page. I have already come such a long way but still have a long long recovery road ahead of me… I couldn’t feel any better supported and ready do this. So thank you to all of you who are following my journey, have sold some cakes, bought a wristband, sent a message or simply shared my page (this list goes on !), you have had such a positive impact on me and my family and we are forever grateful.

    Never give up, no matter how much ‘you gotta be friggen kidding me’ life throws at you!

    I GOT THIS.

     

     

     

     

     

     

     

     

     

     

     

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