by Steve Beasant on 1 July, 2015
This follows the recent passing of Greg Mulholland‘s six year-old constituent Ellie-Mae Brownnutt who passed away on 8th May from Batten Disease. Her four year-old brother Caleb is also affected by the condition.
Last week Greg Mulholland raised Ellie-Mae’s case in a parliamentary debate he led about access to drugs for ultra-rare diseases, saying it was a condition without any cure. It afflicts young children whose symptoms will include epileptic seizures, eventual sight loss, decline of mobility skills, and death is inevitable.
Ellie-Mae and Caleb are eligible for DLA, but campaigners from the Batten Disease Family Association, who Mulholland recently met in Parliament, have raised the distress caused to parents from having to reapply for DLA every three years.
Speaking last week in the House of Commons, Greg Mulholland said:
“Six-year-old Ellie Mae Brownnutt tragically died on 8 May from Batten disease; her brother Caleb also suffers from the condition. The parents of children with Batten disease still have to fill in forms for DLA every three years, even though there is no cure and, sadly, death is inevitable. Some conditions are exempt from that requirement and some are not. Will the Minister meet me, representatives of the Batten Disease Family Association and people affected by other degenerative conditions to discuss how this situation can be changed?”
Responding, Minister of State for Disabled People, Justin Tomlinson MP said Mr Mulholland “has been a real champion for the cause” and said he was happy to meet to discuss the issue further.
Commenting afterwards, Greg Mulholland said:
“It is heartbreaking enough for any parent to see your children have an incurable condition that is getting worse. This is made worse by being asked to fill in long forms every three years setting out the condition of each of your affected children.
“Sadly that this is what Ellie-Mae and Caleb’s parents, Duncan and Lynsey, and many other parents around the country, are having to do. This should not be the case. If a child’s condition is degenerative, they should not have to renew their application for Disability Living Allowance. I welcome the minister’s offer to meet and I hope we can work to make this change for families affected.”Leave a comment