Ally Cadence Trust for Spinal Muscular Atrophy
0800 23 43 762
0333 44 43 762
" Supporting families affected
  by SMA Type 1 "
" Supporting families affected
  by SMA Type 1 "
0800 23 43 762
0333 44 43 762
0800 23 43 762
0333 44 43 762
" Supporting families affected by SMA Type 1 "

Blog - Where It All Began

ACT for SMA Butterfly Logo

We decided to set this blog up to give a little more insight into the work we do on a more personal basis.   

We first started fundraising at the end of March 2009, just 2 weeks after Ally passed away (you can find her full story on our home page).  When we started this fundraising we were a little unsure where it would take us.  All we knew is that we had to do something to help others.  We didn't want anyone else to have to deal with such heartache and tragedy on their own.  We were left feeling very alone, with very little information and support.

The following months saw many fundraisers and donations from friends, family and followers, and on 9th September 2009, Ally's 1st Birthday, we submitted an application for charity status. This came through in December, less than 9 months after Ally passed away.  This was quite an achievement and simply would not have been possible without the huge amounts of support we received, both whilst fundraising and grieving for our daughter. 

We have, to date, supported over 50 families - something we are extremely proud of given that we just didn't know what to expect back in March 2009.  

It certainly hasn't been easy, in fact there have been days where it has been really tough. There were some days, certainly early on, where I would put on a brave face, visit these families, give them all the support and advice I possibly could then sit and cry in my car afterwards.  I remember our first visit so well, it wasn't easy but it made me realise that all the past year, all the long hours working towards charity status were totally worth it and this is what I wanted to do.

As with everything, it does get easier in time and you feel truly honoured to be a small part of these families lives.  We rarely show our own emotions because at that moment in time it's not about us, it's not about how we are feeling, it is about that family sitting there in front of us with their little one.  It is about how we can make a small difference to their lives, how we can support them through the coming days, weeks, months, however long they may have, and about ensuring they are well supported, knowing they are never alone.  Knowing they can pick that phone up at 3am and we will always be on the other end.

We are only a small charity, with just 6 trustees and a handful of volunteers, but we work very hard.  We involve our own children as much as we can and they do, occasionally, come for days out with us and other SMA families where there are children of similar ages.  They have always understood from very early ages (being 2, 3 and 8 at the time) that if Mummy and Daddy get a phone call we have to go, sometimes straight away.  They get packed off to the grandparents or other family members and know that they probably won't see us until they wake up the next morning.  We very rarely book a hotel, unless of course we are travelling to the other side of the country, meaning it can be quite normal for us to leave at 10am and not be back home until 2am the next morning.  Certainly long days, but we minimise all expenses where we can.

For me personally, I'm now at a point where I have accepted what has happened, I have come through my grief and out the other side, something that has been quite difficult whilst running a charity, a business and bringing up 3 children!  I have cried more tears that I knew I had, and grieved far more than I ever thought possible.  I have hit rock bottom but been lucky enough to have an amazing husband, family and friends to pull me back through.  I can truly say that I am happy in life and I love what I can now do to help others.  

I feel such a sense of pride knowing that we get to meet these families because of Ally.  I am certainly not "over her" and never will be.  I have simply learnt to accept things and allow myself to move on.  I will always carry the sadness of losing my daughter, but with that I carry 6 months and 9 days of amazing memories!  I can now think of my little girl and cry happy tears, and be the proudest Mum.  Ally taught us so much and I now realise more than ever how important memories are.  We take photos every day, lots of them, simple things sometimes but things we can look back on later in life and smile and laugh about.


And so this blog will follow some of the things we encounter along our journey.  We are not just "a charity" but also a Mum and Dad that have already walked this path, giving all we can for one simple reason... our beautiful daughter Ally Cadence.

Tags: ReflectionAllyCharityHistoryJourney
Author: Emma Humphries
01 January 2016
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