‘Lost for words at kindness’
The father of a child with a rare condition has praised the efforts of workers from one of the area’s largest businesses after it built and paid for a special sensory play house.
Two-year-old Matilda Macfarlane was diagnosed with Mowat-Wilson Syndrome at six months old.
Unlikely to ever talk and likely to struggle to walk, staff at the Glemsford-based Philips Avent factory spent Thursday building Matilda a sensory play house at the family home in Clermont Avenue, Sudbury, to help her learn, play and develop.
First believed to have a heart murmur, Matilda’s condition was noticed by doctors when it was found she had a hole in her heart and a narrowing of her left ventricle.
Heart defects are just a number of conditions and disabilities that are commonly found in children who have Mowat-Wilson Syndrome.
Incredibly rare - there are only around 200 known cases worldwide - the family has had to spend large periods of time at the Royal Brompton Hospital in Chelsea, London, supported by The Brompton Fountain, a charity which helps support and accommodate families whose children are at the hospital.
The idea for the playhouse came after the family met Warren Skeggs, a production manager at the Philips Avent factory in Glemsford, at a barbecue for the charity.
A family member of Mr Skeggs had been treated at the hospital and just weeks later he contacted the family saying he wanted to do something for Matilda.
On Thursday he took 13 staff members from the factory to build the play house.
“It’s so touching that he brought all those people down with him,” said Matilda’s father Alex, 36.
“It was so hard for them. They had lots of red tape, they couldn’t use any power tools.
“Most people would have given up. It’s so lovely of them, they need recognising.
“Matilda will have severe learning difficulties. It will be hard for us to bring her on.
“They have gone out and bought the play house. It has lights that go to music and soft toys that help her move.”
Another key aspect is the many mirrors in the house, with Matilda’s own image helping to gauge her surroundings.
“Warren went to the trouble of researching her condition and finding what she needed. He’s an incredible bloke, he used his budget for team building that year for Matilda. They must have spent thousands.
“I’m lost for words really. I tried to do a speech on the day but was lost for words then. We’ve been through so much.”