Ava was born in the summer of 2006, a healthy, happy baby who thrived and met all of her developmental milestones.
In 2008 we moved to Germany when my husband’s job – for a British company he had worked for since leaving university – took us there. It was to be a three-year secondment for him and a work hiatus for me.
Just before Ava’s third birthday we noticed changes in her demeanour, subtle at first and then more obvious. We visited doctors, audiologists and paediatricians, where I was made to feel like an over-anxious mother. Then, at the end of November 2009, Ava was rushed to hospital with a suspected brain tumour. And so began an emotionally painful, three-year journey to try to find a diagnosis for our precious girl.
By the time Ava finally received a diagnosis, she was profoundly deaf, certified blind, had lost mobility and was starting to suffer from breathing and swallowing issues. Brown Vialetto Van Laere syndrome was the name put to this neurally destructive disease, of which there have been only 74 cases worldwide in 100 years. We started a trial of high dosage riboflavin therapy, which began to slow the decline in her health, and we even saw some small improvements in her mobility, breathing and swallowing.
By now we had been in Germany for more than five years, unable to leave as the research into Ava’s condition and her treatment was taking place there. But time had passed and we were finally able to lift our heads to survey the life around us. With Ava medically stable we prepared to return to the UK. Ava was educationally behind and was learning to talk using her hands, so she needed the support of the signing community. We had left the UK with a healthy child and were returning with one with complex needs and requiring a myriad of support. My husband stayed on in Germany to conclude his extended contract: his employer had been simply brilliant with us and in return he felt he should quite rightly finish what he had started with them.
Myself and the girls returned in November 2013 and as a matter of course I began to put into place the services Ava would need: medical, educational, social and financial. We applied for disability living allowance (DLA) for Ava and motability benefits, and after consideration by the Department for Work and Pensions (DWP) she was awarded the highest rate for both. As her sole carer, and supported by our local council, I also applied for carer’s allowance. This is where the wheels came off the cart. I was denied, even though Ava was receiving DLA, and I was told I must go to an appeals tribunal.
On the day of the final court submissions in February this year, we received the first of two letters saying Ava’s DLA had been rescinded because her father pays the equivalent of national insurance in Germany; two days later we received another letter saying she was not disabled enough to qualify. We spoke four times that day to the DLA team, who could not explain comprehensively why the benefit had been withdrawn. But the timing – and the fact that no DLA meant no carer’s allowance – was not lost on us.
I saw red, I was so angry. We have been through so much with Ava, I have never shied away from a battle on my daughter’s behalf and I was not about to start.
So I posted about it on social media. I did not expect it to go viral. I had thought perhaps that it might provoke a little local interest but I have been astounded by the outpouring of support, the kind words and shared stories that we have received. And yet it saddens me that so many people have been mishandled, treated poorly and feel such anger towards the very department that should support them, the most vulnerable of our society.
What I see now is that this story transcends Ava’s case: that at the heart of this is a need for reform, along with clear and open dealings and educated decisions. Those working on the frontline of the DWP need to be trained properly, to understand the legislation they are applying, to have the time to review each case and to work to transparent guidelines.
It shouldn’t take an eight-year-old disabled girl and her angry mum to bring about change.