William Goodson, two, has Angelman syndrome, a genetic disorder that affects the nervous system and causes severe physical and intellectual disability.
His delayed development means he will never talk and requires significant support in the hope of one day being able to stand and, perhaps, walk.
William also has severe and complex epilepsy that resulted in 27 ambulance rides to hospital between April 2017 and September 2018.
He currently requires six medicines in the morning and eight at night, and will always require one-to-one care.
That is no easy task for his parents, Emma and Andrew, who are both 37 and hold full-time jobs in London, but it is made somewhat easier by the care and support of East Anglia’s Children’s Hospices (EACH).
William, Emma and Andrew, who live near Colchester in a village called Messing, were introduced to The Treehouse, EACH’s hospice in Ipswich, in early 2018.
William has since benefited from short breaks, hydrotherapy to help build his core strength and motor skills, as well as specialist art, play and music sessions.
Emma and Andrew love “the joy on the faces of all the EACH staff when they meet William and he wins them over with his cheeky smile”.
William’s time at The Treehouse allows them the opportunity to “become more like normal parents as someone else deals with all the medical requirements” as well as some “invaluable” respite.
Emma and Andrew also receive counselling from EACH and attend special events for parents where they can spend time and share experiences with those in similar situations.
In addition, they have had EACH staff join them to discuss William’s care needs with other medical professionals, helping them fully understand everything being discussed.
Andrew said: “EACH has helped in so many ways, from providing the welcoming space of The Treehouse for William to visit, to the support we receive as parents through both information and respite. Without EACH, we still wouldn’t have received any overnight respite as the provision through social services is still not in place, despite the assessment having been carried out early January 2018.”
Andrew took part in EACH’s Ride for Life, that sees cyclists pedal over 200 miles between the charity’s three hospices, to “try and give something back” in July 2018.
He said: “It was an amazing event. Everyone organising it did their utmost to make sure all the riders had fun. Focusing on getting around as quick as possible would only mean spending longer in a hotel, so taking time to enjoy the amazing route (and a few of the pubs!) was highly recommended. I undertook the challenge with a friend from work and we found four others for a fun chain gang who all helped each other along. Chapeau Events, that oversaw the route and supported the ride, was excellent all-round.”