Car Wash for Stanley's Heroes
Clacton firefighters will be holding a special car wash and fun day on April 21 to raise money and awareness for charity Syndromes Without a Name – SWAN UK.
The station decided to raise money for the charity after the help and support they have given to Green Watch Firefighter Robbie Newman and his family. Robbie’s son Stanley suffers an undiagnosed muscle condition which means he has trouble supporting his own weight and even affects involuntary muscular reactions like swallowing.
The charity works with the families of children with undiagnosed genetic conditions.
Robbie said: “When Stanley was born nearly two years ago he seemed perfectly normal but as he grew we noticed that there were a few problems. He would go floppy and was unable to lift his head when he was laying on his tummy.
“We have been back and forth to Addenbrookes Hospital in Cambridge countless times over the last year as Stanley has undergone test after test to try and find out what is wrong with him. He has had several blood tests, genetic testing, an MRI, an EMG, a heart scan, muscle nerve conduction testing to name a few and as yet we still do not have a diagnosis, and without a diagnosis it is very hard to get information and support.
“That is where SWAN UK has been such an enormous help to us. We know that Stanley has some kind of genetic muscle disorder but not exactly what. They have helped us get in touch with other families going through the same thing.
“We have been through the depths of despair and had news which has left us worried sick but working with SWAN UK has helped me cope with everything which has happened and to find positives which have been so important for us through this process.”
Stanley is one of 6,000 children born every year with an undiagnosed genetic diseases and the car wash at Clacton comes in the same week as Undiagnosed Children’s Day which takes place on April 25.
“It was actually the watch’s idea to do something like this,” said Robbie. “They came to me and said that they wanted to do something to help and I had the idea of doing a car wash because it’s something we have done at the station and it has always raised a good amount of money.
“We are combining it with a fun day which will include a bouncy castle, face painting and a chance for children to have a look around the fire engine.
“We really want to raise as much money and awareness as possible for SWAN UK and the plight of children and families living with an undiagnosed genetic syndrome.”
The car wash will take place at Clacton Fire Station on April 21, which is Easter Monday.
A benefit ball will be held at the Martello Caravan Park on Saturday April 26 to raise money for SWAN UK and Robbie hopes to hold a sponsored fun run on the promenade in Clacton later in the year.
A donation page has been set up where people can pledge money to SWAN UK here: http://uk.virginmoneygiving.com/team/TeamStanleyNewman
To learn more about Stanley follow his story on a special Facebook page which has been set up. It can be found here: https://www.facebook.com/stanleysheroes