Walsham-le-Willows mum thanks EACH for supporting son, 4, who has life-limiting illness
A Walsham-le-Willows family has thanked a local charity for helping them enjoy every moment with their four-year-old son, who has Hunter syndrome.
Rupert Wright is affected in almost every way by the disease which, in severe cases, can limit a child to 10-20 years of life.
His mother Naomi, 32, said: “Being a parent, all we want to do is protect our children, (but) I can only watch this disease slowly take my little boy away from me.”
Hunter syndrome, also known as mucopolysaccharidosis type II, touches just one in 100,000 male births.
It can affect growth, physical appearance, brain and intellectual ability, eyes, ears, windpipe and nasal passage, heart, liver, spleen and bowel, joints and skin.
The family was informed of the diagnosis over the phone in October 2016.
Naomi, who works for her parents’ office cleaning business when not caring for Rupert, continued: “It was by far the worst day (of my life).
“We were asked to go in the next day for a meeting to discuss what would happen next. I remember sitting in a room with no windows and a, very aptly, box of tissues on the table.
“Rupert's wonderful consultant spoke kindly to us and did his best in every possible way, but still had to talk about the harsh reality that was about to start a new path for all of us.
“Lots of things were discussed, mainly that Rupert would be under the care of Great Ormond Street Hospital.”
Alongside the London organisation, Naomi, Rupert and his six-year-old sister Alice, are helped by East Anglia’s Children’s Hospices (EACH).
The charity provides him with short break care and Naomi with counselling. Alice, meanwhile can attend a playscheme when on holiday from Gislingham CE Primary School.
EACH currently operates a hospice in Quidenham while a larger base in Framingham Earl is constructed.
It has helped Rupert, described by his mother as a ‘loving and cheeky character’, get the most out of life. He is now attending Riverwalk School in Bury St Edmunds.
Naomi added: “EACH makes a huge difference and, honestly, I wouldn't want to be without the care and support from everyone who helps.”