Our beautiful Shea was diagnosed in September 2010 with a rare degenerative condition called Adrenoleukodystrophy (ALD).
Our world fell apart.
He was 6 years old and up until this point was a happy, lively, cheeky boy with eyes and a smile that would light up a room.
He became ill very quickly and started to loose the ability to walk, see, speak and eat.
We were first introduced to Claire House in January 2011 and at first we couldn’t get our heads around the fact that we would be taking him to a hospice.
The word ‘hospice’ alone scared us.
How wrong were we?
We were met by the most amazing team of people in a bright open place, full of joy, fun and laughter. The absolute opposite to what we were expecting.
We started staying regularly, giving us as parents a chance to switch off for a bit while Shea was treated like a VIP and our other children played, and spent quality time with Shea, something which was difficult as Shea’s needs increased and became a lot more complex.
Shea crafted, swam, played in the park on the grounds, had music therapy, used computer technology to score goals and have long soaks in a jacuzzi bath.
Claire House became our lifeline.
Not only taking care of Shea but offering siblings events, giving our other children a chance to spend time with children in similar circumstances, even becoming little celebrities taking part in a CBBC programme.
On 27th October our beautiful boy gained his angel wings,at home, surrounded by his loving family.
Claire House continued to to look after him, and us as a family. Offering priceless memory making and helping to make this horrific time a bit easier.
We will never be able to thank Claire House enough for their love and support over the years and especially for the amazing support after Shea had passed.
Today would of been Shea’s 14th Birthday.
We have chosen to pay for a day as a thank you to all.
We love you Claire House x
