We are a young organisation but we’re working hard towards our vision of a future where a diagnosis of a rare genetic condition will not be a barrier to experiencing everything that life has to offer – most importantly enjoying time together as a family.  There is a clear need for our support, and demand for our services is growing.

You can find out more about our work, the impact that it has and our finances in our Annual Review & Accounts.  These can be viewed on the Charity Commission website.

 

 

Thank you to The Sandcastle Trust from the bottom of our hearts.  We are keenly aware that one day our little girl won’t be here.  We want to make the best of each day we have with her and not waste any of them – the annual passes you have awarded our family will help us do that”

 

Since The Sandcastle Trust was formed in June 2016 we have provided some much needed fun and respite to 259 families.  

 

My husband’s unexpected death last year from a heart attack due to an undiagnosed genetic condition left the whole family shocked, devastated and exhausted.  Thank you to The Sandcastle Trust for our short break.  Although we felt desperately sad at the huge void of my husband not being there, a break away from home and hospitals was just what we needed.”

 

It is a sad reality that a diagnosis of a rare genetic condition can restrict social opportunities available for affected families and that the physical, emotional and financial strain can often tear families apart.

 

Juggling all of Louis’ appointments with the hospital, occupational therapist, orthopaedic surgeon, doctors etc meant that I had to give up work. This has had a considerable financial impact on our family.  Special days out and family holidays are just not achievable for us now.”

 

The emotional strain of being diagnosed with a rare genetic condition or caring for a loved one with a diagnosis can have a profound impact on mental health.  A little bit of fun and some respite can go a long way and the families we support report of feeling better able to cope with the challenges of their daily lives following receipt of a grant for a special day or short break from The Sandcastle Trust

 

“Thank you so much for arranging an Elf to visit us at home and take Alfie’s Christmas list to Santa! The logistics of visiting Santa as a family this year with Alfie being so ill seemed insurmountable but Alfie’s face when an Elf walked through door was absolutely magical, something we will all remember forever.”

 

We put the whole family at the heart of our grant making as we believe that a child, young person or parent’s diagnosis with a rare genetic condition will have a profound impact on the whole family.

Family life completely revolves around Ellie’s needs.  I constantly worry about the impact of this on our other two children – will they end up resenting her, or me?  It was so lovely that the short break you awarded us was for them as well as Ellie.  They deserve it too.