The ups and downs of living with a teen

Ally Cadence Trust for Spinal Muscular Astrophy (ACTSMA)

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I support a few charities, but this is a personal one for me and with August being the SMA Awareness Month, I wanted to share the Ally Cadence Trust for Spinal Muscular Astrophy or ACTSMA for short, with you.

The charity is run by my good friend Emma and her husband Karl, following the devastating loss of their gorgeous baby girl Ally Cadence at 6 months old. You can read the Ally’s story here

I remember the day Emma announced she was pregnant with Ally, and everyone was so happy for them, as this would complete their family, and I remember the day Emma posted her final bump picture. We all awaited the news of Ally’s arrival and then the pictures of the most beautiful little newborn baby girl was posted. One thing that always came across was how happy she was, she always had a little smile on her face. Ally became ill and was in and out of hospital, with Emma and Karl also having 3 other children to look after, it was a hard time for the family. Ally was diagnosed with SMA Type 1 and died just 12 days later.

At the time, there was very little support for families living and coping with caring for a child who has been diagnosed with SMA.  So Emma and Karl set the charity Ally Cadence Trust for Spinal Muscular Astrophy in Ally’s honour and to give the help and support that they unfortunately did not receive.

They are based in Lincolnshire where they live, but will travel all over the country at anytime to see parents who have just had the heartbreaking news their baby has been diagnosed with SMA, there are 5 types of SMA as explained here.

The trust works so hard to raise funds, so that they can help families with the much needed equipment that they need. You can find out here just what they help with.  In between running the trust and helping families, they also work hard by taking part and hosting charity events, including the Butterfly Ball.  This is such a fantastic night of food, dancing and a charity auction.  We have been going for the past few years and it is honestly one of the highlights of our year.

During the month of August I will be posting the blue butterfly in honour of Ally, and SMA Awareness month.

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