Over the last couple of months Anglian Lifts have had the pleasure of meeting Anastasia Hazell and her family.
Anastasia is a six year old little girl who has been diagnosed with DIPG last March (2021) and has been given a life expectancy of just 12 months by her medical advisors.
Her mother contacted the company as she was in a desperate situation to have a home lift fitted as Anastasia was no longer able to climb the stairs, she had approached many other government agency’s and companies to try to get assistance but was meeting brick walls at every turn, it was our moral duty to help.
Below is part of Anastasia’s story, written in her own words by her mother Alexandra Hazell and un-edited. We feel it is important that people read and understand the struggles of some families and that sometimes perseverance will pay off in the end.
Hello my name is Alexandra and about 7 months ago my perfectly healthy 6 year old daughter was diagnosed with terminal DIPG cancer. We had just finally gotten our offer accepted on the house of our dreams. We had been looking for 5 years for the perfect home, and my 2 year old son and 6 year old Anastasia had had most of their toys packed for over 2 years. We went from worrying about things like which movers we were going to use, and how we were going to decorate our master bedroom to thinking about the end of life for our baby girl, and how we would wash her body as her brain deteriorated around her. We contemplated whether we should move or not but we quickly realised that our first home, though in the perfect community, wouldn’t allow Anastasia the ability to die at home but rather be forced into a hospice situation. Now throughout her treatment there was one thing she feared more than anything else, more than surgery, more than taking medicines, more than radiotherapy, it was the fear of being away from home. We realised that by having to use a hospice it meant that her deepest fear came true. We knew we had to get our dream house to not only allow our family to grow and my new counselling/ tutoring business for students struggling with mental illness to flourish, but we needed a large enough house to accommodate the comfortable death of our baby girl.
We had the most incredible support from the local community, the school, my other mum friends and my neighbours had come together, like our personal superheroes to our aid! We were promised that people would come and help us renovate our home quickly for our little girl. Our friends had helped us raise funds that we thought we could use along side the DFG or disability facilities grant. This is an up to £30,000 government grant that can help someone retrofit their house for their disability. We weren’t expecting to need anywhere near that much money, but knew we needed a through floor lift for the new house. We were going to get a used lift fitted to save about £7,000 and have our friends who were tradesmen help us with our home.
Building and converting the “Palliative paradise”
After a very stressful move, we finally got ourselves in our new forever home. Unfortunately, because the sale took so long, we were 2 months away from our intended move in date. This pushed my daughter’s healthy days considerably, and made me wonder if she would have her last summer there or not. Due to the housing boom, about 90% of our promised workforce for our home was gone. They were super booked trying to make up the money that they lost over covid. I understood entirely as I had held down three jobs trying to get our mortgage, and my husband two. However, we were lucky enough that family friends Luke and Cheryl were able to take over. They were our heroes as we worked out how we were going to pay for our daughter’s new ‘Palliative Paradise’. It became apparent that her need to stay home meant that all of our plans like Disney World, visiting family abroad and taking her adventuring through the UK weren’t going to happen. Not all end of life looks like you hope it does on the television. Not all children can manage to ‘make a wish’ or have their dreams fulfilled. We were so blessed however, as we were able to travel a very special trip to Centre Parcs fulfilled by friend’s donations and help.
“What is your daughters life expectancy?”
As this 2 person team tackled a construction firm level project, we were quickly realising how extensive the renovation for the house would be. Moving the electrics for wheelchair access meant that the whole upstairs needed rewiring as it was dangerous, the gate needed to be electric as our two year old found it impossible to say no to running into the busy road and could figure out locks. Either way we knew that we could depend on the £30,000 DFG to help us retrofit our daughter’s disabled bathroom. Or so we had thought. Before we were even able to move into the new house we were told by occupational therapists in North Norfolk that we shouldn’t even bother applying for the DFG. The DFG has a waiting list so long my daughter would be dead before they could help us. I thought that wasn’t a good enough answer, so I contacted my local councillor, Adam Varley, who immediately put me in touch with all the relevant government bods to help my baby girl. I contacted Karen Hill, the woman in charge of the DFG to explain to her my story and see if we could get some help. Everyone else had been so helpful, that I was expecting the same kind and understanding support from Ms. Hill. When I explained our horrible situation, I was hoping she would be happy to help. Instead she sucked her teeth.
‘I am so sorry but I doubt we will be able to help your little girl.’ She sighed deeply as if she were a waitress apologising for the unavailability of some of that day’s fish.
‘Excuse me? You’re telling me there isn’t anything available? I was told by Addenbrookes that we could apply for the DFG as help to retrofit our home for our daughter’s end of life.’
‘What is your daughter’s current life expectancy?’ She said cruel words callously, coldly. They hit like an arrow in the chest. ‘Excuse me? Well we….we aren’t sure, the doctors said she would be lucky for 8 to 10 months. And she’s responded well to the radiotherapy so we are hoping thats….’
‘Yes well, the problem with the DFG is that the house has to be inhabited for 5 years by the individual to be accessed.’ This I have found out to be untrue but rather for those who receive the grant allowed to move in 5 years, thus leaving them to retrofit another home. This did not apply to those facing end of life.
‘You mean to tell me any person with a terminal diagnosis is exempt from receiving the disabilities facilities grant?’
‘Yes well that’s how the grant was made. I have had a similar situation before sadly.’ Her voice was distant and devoid of any contrition.
‘Wait so you’re telling me that when this legislation was drafted, by the British Government, they determined that terminally ill people would be exempt from disability funding?’
She stuttered and it was obvious that she hadn’t been challenged this way directly before.
“Why would MPs sign a grant into action, a grant that was specifically geared towards funding normal life for disabled people, that specifically discriminated against people with a terminal illness? That’s absurd.’
I quickly realised she was used to hiding behind emails and the written word. Ms. Hill very rarely had to speak directly to the terminally ill families she had fobbed off.
“Who decides?’
She didn’t understand.
“Who decides who will receive the funding? Is it a council of people, is it an occupational therapy team?’
There was silence…and that’s when I realised I had sussed her out.
‘I do.’
I was enraged, I hung up the phone and cried deep stomach full sobs. Anastasia came upstairs, back then she was still able to get about alone.
“What’s wrong mummy?’ She was still able to talk too.
‘Know this my darling that no matter what, No matter who says anything I promise you that I will fight for you and you will not go without. Know that you will not go without.” I hugged her tightly and sobbed.
Strangely enough, just then I got a call from another family who had lost their boy Benny to DIPG the year previous. They say DIPG is rare, but it isn’t, DIPG is a disease that is diagnosed every 9 minutes. DIPG is the only childhood cancer with a 0% survival rate. Sometimes there are miracles, but not often.
The Pitcher family in Cromer have been a constant source of strength and help for ours, ironically they had faced a very similar circumstance with their little boy and the North Norfolk council. They were very familiar with Karen Hill, and that evening they were just about to meet with Duncan Baker, the MP who made it his personal goal to help families of terminally ill children. They gave him my contact and I was called the very next morning by Mr Baker.
He was just like Adam, incredibly helpful and available. He said that he was familiar with this bending of the grant. He had been trying to help the Pitcher family when they dealt with similar circumstances.
When I posted about this phone call on Anastasia’s group ‘Anastasia’s Angels’ we had the most incredible thing happen. A lady in our community shared our struggle to get a lift fitted for my daughter to her employer, Alan Boswell Group. They had been looking for a local charity to donate to and they donated £10,000 so that my baby girl would have a lift to get upstairs to her bedroom. I was thrilled. I broke down in tears again, as I realised that we could give my little girl her dream. Then I found out that the company had changed their quote and it would in fact be closer to £15,000 for a new lift. We were defeated as we had to spend on such things as rewiring the upstairs and plastering over the 120 year old gypsum walls. Our life felt like a rollercoaster.
We were again thrown down. However, we realised that the new house was under a different council, rather Great Yarmouth. This was incredible as it meant that they had a different DFG team. They have been super helpful and super responsive. I was amazed at how quickly Nigel Powles and Alison Edwards the OT have been super available and getting every resource possible for our little girl. However, we realised that the DFG application process was so involved, and so difficult. Unfortunately, it is very outdated and relies on being able to easily find a construction firm to help fit things. We did not have access to that. It was very hard to even get someone out to quote for a job. We also wanted our friends to do it. They had done everything for our little girl and as Luke was a certified plumber with 16 years of experience and knew how to install disabled wet rooms.
Yet still our friends pushed, thousands and thousands more came into the Go Fund Me. Even with funding expensive private experimental treatments. We were in awe of people’s generosity and our friends’ tenacity and despite dealing with the decline of our baby girl, we have felt more blessings in our lives than we ever thought possible. A couple weeks ago I realised we couldn’t wait any longer, our daughter was unable to walk unaided and could no longer crawl up the stairs. She was in decline…. I realised we needed to secure our lift, we had access to the £10,000 and if we could fit a used lift, we could make it happen. The DFG wouldn’t normally cover used equipment, unless you jump through lots of red tape, we didn’t have time for red tape. It really is a failing net.
Again I was driven. After 7 months of dead ends and no call backs from equipment manufacturers and fitters, even a con by a couple who lied to me about their used lift. I finally found the perfect lift on ebay. £3,500…the exact model we needed to fit her chair and ourselves. It was less than a year old. I knew it would go fast, I messaged the owner and explained our situation. She was sceptical but wanted to help if our case was true.
I knew I had to make this work. I called every mobility lift company in the country. No, No, No I kept hearing that I was too far away. Or the companies refused to remove old lifts. Or they didn’t know how to fit the lift we needed. The other options started at £17,000. Those were well out of our budget.
Then I called Anglian Lifts. The receptionist said she would call the boss immediately about our situation. I cried with thankfulness. Phil Rice called me back, and said the words I had been dying to hear ‘I will make it happen for your little girl, no matter what let’s make this work.’ I had never felt such unbridled joy in my life. The lady said she would sell us the lift if we were there tomorrow. Phil drove the 3 hours with the Anglian Lifts team to inspect the lift. I felt sick with courage, pain, and the constant struggle to make my little girl’s short life better. Luke built the aperture, and Phil was able to get donations of items to make it under our budget. We were overwhelmed as the council and our structural engineer Nigel Syder bent over backwards to make sure to help get it fitted quickly and safely in our old home.
This week, Phil Rice and his team came to fit our Stiltz lift. They were kissed by our dog and we fed them bacon sandwiches as they helped teach Luke how to fit and fix our lift if we were to get stuck. Seeing that lift stand in our home was incredible. And I basically spent the installation crying. I had promised my baby girl I was going to never let her go without. She didn’t want Disneyland or to meet a hero, all she wanted was to stay at home and be with her mummy. The only thing I could do for my little girl was build her a paradise, a perfect place to be. And we are getting there. Slowly but surely with the lovely community around us we are making it happen, one day at a time.
Watch the video of Anastasia’s first go in her lift here https://fb.watch/8-uRMlTF58/
