myfamilyandmsa

Living with Multiple System Atrophy. A life limiting, neurological brain disease.

Fundraising for MSA

on March 12, 2013

Sam an d Rhanna at the fundraiser
Sam:
Saturday 9th March …. Today I felt like a princess, I had my nails, hair and make up all done by the nicest girls you could meet in Zuri Boutique, they did Rhanna and my best friend Anna as well, so we all walked (well I wheeled) out of there feeling like supermodels!

It’s been such a very longtime since I’ve felt like that and although Andy tells me all the time I’m beautiful, the one thing MSA hasn’t taking so far is my eyesight so I know when I look in the mirror exactly what I look like.
Today for the first time in well over a year I wore a dress!! A beautiful maxi dress covering tubes and tubes and bags and tubes lol OMG it felt so good to feel feminine again! It makes me cry now to think about how special I felt on Saturday, the day wasn’t meant for me, it was meant for MSA and our continued battle to raise funds and awareness but when Andy looked at me I felt I couldn’t have been loved more.

SamMy sister, my mum and Ali, Andy’s mum and dad, our kids the rest of our family and friends were so lovely it was hard not to believe I looked nice! The whole night was a huge success and OMG I had a stunning boutique of flowers delivered only from…Phil and Holly (from This Morning)! How amazing is that!
David Cruickshanks shot the whole night so the film will be fun to watch, I had to spend so much time concentrating on my speech so that for just one night I felt normal. Needless to say I am now exhausted but wouldn’t change a thing.

It scares me to think that we may not have many more nights like that, I know how very tired I am and it makes me sad and a little scared, I haven’t said that out loud so for Andy and everyone else it’s the first time they will read that, I’m frightened of what the future holds for us just now I know how tired I get and how much sleep I need but I promise to Andy, Rhanna, my mum and Andy’s parents that I won’t give up anytime soon, still to much to do!

The fundraising night made £1920 which is fantastic and after costs the rest is now in my justgiving page for The MSA Trust! We are incredibly proud of the way our community pulled together!

Sam and AndyWe are meant to be going for respite 1st April for four nights but our social worker has just phoned as I’m writing this to say unfortunately they can’t fund Andy and Rhanna so we would have to pay £450.00 ourselves. Andy isn’t home just now so I’ll talk to him when he comes in, four days to us is a longtime and I don’t want to be away from them. The fact is that they need/deserve a break much more than me and for the countless people out there with all different illnesses it can be so difficult to understand the governments ways of thinking! It would cost over £900 a week if I was in respite full time, carers allowance is £53 a week…doesn’t anyone else think that’s just wrong? I don’t think I’m any more deserving than the next person but I do firmly believe that my husband and my daughter are more deserving than a whole lot of people playing the system.
I’m very tired now so, I’ll stop boring you 😀 with love as always Sam xx

Rhanna:
Hi everyone 😀 well the charity night went better than anyone thought it would, we had great music and great fun and raised lots of money, can’t wait to see the video David is making for us.

Rhanna on the dance floorPoppy and I were last on the dance floor hehe although we also had group dance/hug to shania twain ‘your still the one’ mum and I used to sing it all the time really loud in the car! She tried really hard with her speech all night which has left her really tired, I wonder if just overtired herself on Saturday.

One really good thing about Saturday is the my step-sister Emma and step-brother came and its been a very long time since they had seen my gran and grandad on Andy’s side :grin:my mum fixed that because as you all know she just wants her family together, it makes her happy which makes me happy.

It’s getting harder and harder watching mum getting more tired so much more easily and falling asleep even when she’s eating. I see her getting smaller and smaller and she looked so beautiful on Saturday, her eyes were shining, it was amazing!

Mother's Day cardWe had a lovely Mother’s Day and just chilled out, got take-away and watched dancing on ice, it was lovely day especially as we were so tired after Saturday night.
My mum is loyal, supportive and always the first to offer to help, she has to learn not to do that anymore and put herself first sometimes. Exams coming up soon and my promise to mum I will do the very best I can.

Thank you mum for being the best mum in the world, love you to the moon and back again. xxxx xxxx xxxx xxx

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6 responses to “Fundraising for MSA

  1. Mine and Geoffs (cos I always share!!) beautiful brave brightest shining star. Words will never be enough to explain just what we think of this incredible young lady that is Samantha Crawford and her darling husband Andy and absolutely stunning daughter Rhanna, just to say you will all be in our hearts forever and that’s a promise and I never break a promise, I will pray for you all for the rest of my life, you are all such an inspiration and are the ones that have made Geoff and me sit up and take note and try and do our bit to help and raise funds. You, in a nutshell Sam have made Geoff determined to go on and have a focus. Thank you from the bottom of our hearts for all you have done and are still doing C & G xxxxxxxxxxxxxxxxxx

  2. wilma0750 says:

    Well samantha uve done it again super amazing and thats how looked on saturday even tho u were knackerd and in lots off pain im so proud off you and yours and the ammount that was raised was great think ma stovies an mac cheese helped lol , the time has now come samantha for you to stop now with the fundraising its taking way too much out off you you need to spend time wi ur wee family and am sure that folks that know the real you will agree time to stop and save your strength luv u infinity xxxxxx oh aye nearly forgot i think its so sad that your now not going for respite care perhaps the social services should take a leaf out off your book GREEDY SODS rhanna super awesome and so was your speach to your mum an awbody else that was there on saturday dont think that there any dry eyes in the hall super amazing xxxxxxxx luv u zillions

  3. Jean Ramsey says:

    I think of you and your family every day, wondering how you are and hoping you will have less pain. I have MSA but no one I talk to has heard of it. I wish there were more awareness in America. I live in New Hampshire and sometimes feel so alone. BUT, here is hoping we can educate the public. God Bless and thank you for all you do to get the word out. I agree health care needs to be improved.

  4. Heather Buckel says:

    Sam, what a shame that you have to pay for your family to join you for respite care, it is so unfair. Sounds like you had a great fund raiser with plenty more in the pipeline. Keep as well as you can, love to you, Andy and Rhanna xxx

  5. Angie says:

    I follow your blog. You are an amazing family. My husband Eric is suffering with MSA and is now in his 6th Year with it. You are an inspiration. I am so sad that social servies want you to pay for Andy & Rhianna – I pray that some angels come to your rescue. Thank you for sharing I have sat her at the computer with tears streaming down my face reading the words from you and your lovely family. May you yet get many “Sunshine Moments”. xxxx

  6. annaw53 says:

    was great day and night sam looked amazing as did rhanna xxx

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