An eight-year-old British child with a rare nerve disorder has had her personal care allowance cancelled after receiving a letter from the government saying that Germany should be responsible for her disability payments.



Ava Jolliffe, who is deaf, a wheelchair user and diagnosed with Brown Vialetto Van Laere Syndrome (BVVL), was granted a high rate of UK disability living allowance in June last year.



However the family, from Preston in Lancashire, learned last week that the care component of Ava’s disability living allowance (DLA) had been rescinded because her father works in Germany and pays the German equivalent of national insurance.

Ava’s parents were initially told by the Department for Work and Pensions (DWP) that the care allowance – around £80 per week – was cancelled as her disability was not severe enough to qualify.

The family moved to Germany in 2008, when Ava was two, as her father Graham was seconded there on a contract with the British company for which he has worked for 25 years.

However Ava became unwell within months of their arrival and spent much of next few years in hospitals in the UK and Germany as doctors worked to find a diagnosis.

Due to Ava’s health problems and the need for family support, she returned to the UK permanently, with her mother, Laura, and her 10-year-old sister, Libby, in 2013. They were assured Ava would receive the care allowance but for reasons still unclear to the family, the benefit has now been taken away.

Laura, who as Ava’s sole carer provides at least 128 hours of care a week, said: “We have a child here who has very obvious needs that are well documented, and has been born and raised and lived in this country. We’re having to fight for basic rights.”

Ava’s story gained attention on social media last week when her mother posted a photograph of herself holding up the letter from the DWP covered with a sign that read: “The DWP has withdrawn the DLA from my blind, deaf, mute, wheelchair user daughter. She is just 8 years old and has a rare life-limiting neurological disorder – BVVL.”



Since then an online petition has been set up to reinstate Ava’s care benefits.

Laura Jolliffe told the Guardian she used social media to tell her daughter’s story because “we’ve already been told the system is fudged, we’ve already been told no one is listening to us.



“We keep talking ourselves in circles so let’s see if we can have a voice,” she said. “Ava hasn’t got her own voice, she can’t speak. Somebody has to give this child, this eight-year-old disabled child, a voice.”



The family have contacted David Cameron’s office and Laura said: “I understand the sadness he’s obviously had with his own child, it’s a very tragic story and such sadness for his family. From that point of view you would hope that he would understand the additional pressures on a family such as ours is just unfair.”

Since December 2013, Ava has been living permanently in the UK and attending a specialist school.



In the first letter from the DWP, in June 2014, it is stated that Ava is entitled to a personal care allowance. It reads: “You are entitled to the higher rate because you need attention with bodily functions several times at short intervals right through the day”.



The letter adds that Ava needs assistance with mobility and qualifies for the allowance as she is “virtually unable to walk”.



Yet a later letter from the DWP, dated 12 February 2015, states that Ava’s disability is not severe enough to entitle her to receive allowance for personal care.

In a second letter from the same day, the removal of Ava’s personal care allowance is explained as being “because your family member is living and working in Germany. This means that Great Britain is no longer the competent state to pay your care component of DLA.”

A DWP spokesperson told the Guardian: “Miss Jolliffe was originally awarded the care component of DLA in June 2014 in error,” adding that “as her father works in Germany and pays the equivalent of national insurance contributions there, Germany is the state responsible for providing that benefit”.



The spokesperson said the first letter sent to Ava in February – which said the reason for cancelling her care allowance was because her disability was not severe enough – was sent in error.



Ava Jolliffe. Photograph: Laura Jolliffe

Ava’s mother responded to this by saying: “Now they are saying that their policy team, who looked at this in June 2014, are incompetent and make errors. How are the Germans supposed to manage the DLA from another country, check on Ava’s disabilities and manage her reviews?

“When we spoke to the DLA [last] Wednesday they admitted they had never even written to the Germans, and yet they are pulling Ava’s DLA without even having established if their position holds weight.”



According to her family, Ava is certified blind, deaf and as a wheelchair user. She has facial palsy and has trouble swallowing food.



She attends the only deaf school in Lancashire, and the local council pays for a one-on-one intervener who translates for Ava, and helps her with mobility and using the toilet, her mother said.



The diagnosis of BVVL, linked to several genes that cause riboflavin transport deficiency, is rare, with only 74 cases having ever been recorded in scientific literature.

“Her disability is so severe she is entitled to hospice care, and the council offers me seven hours respite and pays for help – which costs more than the [weekly] carer’s allowance,” Laura said.



Ava’s mother had applied for carer’s allowance on recommendation from Lancashire county council, but was refused. After appealing for carer’s allowance, Ava’s disability care allowance was rescinded.



The living allowance for disabled children is between £21.55 and £138.05 a week depending on the level of help the child needs, according to the government website.

In order to receive the allowance the child has to be under 16, need extra care or have walking difficulties, reside in Great Britain or any other European Economic Area country, and have lived in Great Britain for two out of the last three years if over three years old.



British national insurance contributions do not go towards disability allowance, according to the government’s website.

The DWP spokesperson said the Jolliffe family’s claim will be forwarded to the German authorities, in line with the relevant European regulation.

Ava’s mother has said she has spoken to the MP for Wyre and Preston North, Ben Wallace, who told her that he will push for the situation be resolved and take it to Iain Duncan Smith, the work and pensions secretary.