Happy Mother’s Day

Today me and my girls have celebrated mother’s day with my mum. I’m so thankful for celebrating this day with my beautiful daughters. Being a mother is truly the most privileged position to hold as I watch the people that my girls are turning into. I cuddle them when they cry, encourage them when they’re happy and try to do everything I can to make sure they grow up feeling safe and loved.

I’ve not IMG-20160306-WA0028told anyone this, but the night we discovered Helena’s diagnosis, I held her in my arms and whilst she looked up at me, through the tears that rolled down my cheeks, I promised her that I would never stop fighting for her and I would do everything I could for her. After all that’s my job as her mother, to advocate for her and protect her from harm (something which makes SMA so devastating, because I can’t protect her from it). I hope that 4 months on this fight is well underway and that we have already created a lot more awareness of SMA. People are also really getting behind the petition launched to gain compassionate use of NuIMG_20160215_170816226[1]sinersen for children with SMA, for which I’m so grateful.

I have to keep hope for Helena that everything will come right in the end. Last time we stayed over night in London we took Helena into St Paul’s where I lit 2 candles for her and my nan. I shed a little tear and asked God to please deliver us from this time of pain, anguish and uncertainty and to please bring us a miracle that could start to heal Helena.

I know that the chances are probably pretty slim to make the changes that need to come about for Helena and I’ve had a lot of “no”s in my quest to access some treatment for her. However I know it only takes 1 “yes” and that will make all the difference. I would quite literally do whatever it takes. It’s easy not to be scared when you know you’ve got nothing to lose and potentially everything to gain.

Wishing a happy mother’s day to all the mother’s out there. With love from Helena and family. xxx

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