EmmaMurphy Stanley Beau Foundation

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00:00Stanley was the most amazing little boy he had the cutest laugh he loved his big brother he was

00:14just amazing when he was about 18 months old he was diagnosed with a rare genetic condition that

00:25we were told was terminal Stanley sadly died in 2019 when he was just four and a half years old

00:38having a child with a terminal illness and living that life for four and a half years I wanted to be

00:46able to help other families in that situation even if it was in the smallest of ways by providing them

00:52with an opportunity to spend some precious time together to just be a family without the

00:57professionals visiting without hospital visits to be able to yeah just be a normal family together

01:06even just for a few days and it can sometimes just be enough to stave off the overwhelm of living with

01:15a child with the life-limiting illness this is the fantastic Joshua tree lodge this is where we offer

01:33most of our holidays to our families this lodge is adapted it has a profiling bed we have a wet room

01:42with various chairs for different children and their different abilities we have widened hallways there's

01:49a mobile voice and we have a hot tub out on the decking which is easy access to hydrotherapy for

01:56the children what did you most enjoy about Joshua tree lodge about feeling like the water and the

02:03swimming on the hot tub I'd say all of those things by being supported by a charity like the Stanley Bow charity

02:13you're able to go on an adventure with your family be separate from your normal situation and just be

02:18together with the weight off my mom's shoulders it was just a lot nicer to play with her and my

02:24brother because we could all play together for once instead of one person missing out and having to

02:29do the washing or runes feed or anything I just want Stanley to continue having a really positive

02:37impact on the world even though he's not physically here it helps me that he's still continuing to

02:45create these positive moments and important moments for other families

02:59players who have been able to communicate with their parents and they are now in the world a month and

03:05long time for other families and friends to meet their families we have had a great time to

03:08look at each other and remember being able to communicate with them in the area I'm just going to

03:13comment to each other and be able to write them with the kids of the kids a lot of

03:15time and I'm going to see you next time .

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