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Sandwich MP Craig Mackinlay, came out in support of a constituent yesterday during International Batten Disease Awareness Day
The Thanet South representative donned an orange tie given to him by Ash family Ross and Leanne Buggins in support of the Batten Disease Family Association.
Mr and Mrs Buggins’ 14 year old son, Ryan, has Batten Disease – a life limiting, neuro degenerative disease.
He has already lost his sight and is losing the ability to walk and talk.
Ryan has epileptic seizures which will only worsen and become severe and complex.
Batten Disease is caused by low levels of an enzyme called 'tripeptidyl peptidase 1' which means that fatty substances build up in the brain, nervous system and eyes.
There is currently no cure or life-extending treatments for Batten Disease, only symptom relief and supportive care.
Families across the country have written to their local MP asking them to show their support and raise awareness of this debilitating condition by wearing an orange tie or scarf this Batten Disease Awareness Day.
Mr Mackinlay said: “I was delighted to be invited by Ryan, Ross and Leanne to help the Batten Disease Family Association in their campaign to raise awareness of this dreadful disease.
“We want everyone who is affected by Batten Disease to be able to live life to the full and secure the care and support they need until a cure is found.”
The parents added: “Our mission is to raise as much awareness as possible of this horrendous disease and also take part in fundraisers that will secure some much needed funds for research.
“So little is known about this disease and while we know that a cure is unlikely to be found in Ryan’s lifetime, we will keep going for as long as we can so that children diagnosed in the future may have a better chance of survival.
“We would like to give our thanks to Craig Mackinlay for showing his support, it means the world to us.”
