We found our lovely little family home 12 years ago, after I came to St Neots for a work meeting and saw an opportunity to buy within our means and a reasonable commute of London. Howitts Gardens was the first place I saw online, was our second viewing and we knew immediately it was the place for us. Lex took the reins on the move and co-ordinated everything and within weeks we’d set up our forever nest.
After Samson was diagnosed with Duchenne muscular dystrophy in 2015 we knew we needed to make improvements to the living room and garden to make it more accessible for him, so we lent on the Bank of Nana Mega and Grandad Pops to enable us to open up the space, put in floor to ceiling windows and ramp access to a large decking area. It changed our lives, and did exactly what we’d hoped it would. The kids relished the garden, had free flow through the beautiful double doors and it was light, airy and open. We loved it.
We also were so lucky to have a large green space out the ‘front’ where the kids all played out all day long, with the front door open, in and out of each other’s houses. They enjoyed the freedom that not many children experience nowadays and no doubt created memories which will last their lifetimes.
Planning for the future
However, I knew that we would need to eventually either move on or make some drastic changes to the house. We simply didn’t have enough space to give Samson the ground floor living space, or to put in a lift to help him live independently in the future.
This stage comes to all families living with Duchenne in their lives. It’s a decision which is often really very hard for families and extremely expensive. Having seen families in the community spend incredible amounts on adapting their houses, I was so worried that I wouldn’t be able to find that kind of money, so set about trying to find something within our small budget that would be suitable.
Finding the right house
I saved a search on Zoopla and RightMove, “4 bedrooms, converted, extended, family home” in the hope that something would become available that perhaps had an annexe, or converted garage, or space to extend. But the results were always way outside our budget and would even then require scores of thousands of pounds additional adaptations to make the space ready for Samson’s needs.
I then looked into adapting Howitts Gardens, but it would leave us with such little living space, it just wouldn’t have worked. Equally, the only other option was a through floor lift in our front room, which would not have given Samson independence or space to live comfortably.
Our forever home
Then I spotted it. The house with the downstairs bedroom and wetroom, converted front and back with equal size living space, room for a car on the drive and space to put in ramps front and back. It was WAY too good to be true.
Unfortunately, the house had been taken off the market, but our estate agent, Sam at Thomas Morris St Neots arranged for us to view. On first sight, it was absolutely perfect. Light, open downstairs bedroom, with space for Samson’s bed to have access both sides. Widened doorways throughout, large and well equipped downstairs wetroom and large open planned living space in between. The only changes we would need to make would be potentially to run a hoist through the living space into the bathroom, but that could be achieved.
I won’t go into the entire story here as it’s not for me to share, but safe to say our vendors understood our situation and we had many things in common.
Finding this house was going to save us a huge amount of stress and money in the future as the adaptations were already there. What is more, the OT team were familiar with the house adaptations and confirmed it would be suitable for Samson’s future needs. And it wasn’t going to cripple us financially (thanks again to the Bank of Nana Mega and Grandad Pops for the moving costs).
Building a team
I don’t think I’ve ever been so driven to make something happen so much in my life. For 6 months I worked tirelessly to negotiate, advocate, work with solicitors, mortgage companies and the estate agents to make this happen. We had the most amazing team around us, including Joni from Elliot Mather Solicitors in Matlock (recommended by a friend and I cannot recommend more highly), mortgage advice and constant support from Estellle and her team at Premier Plus St Neots, and of course the unswerving and incredibly personal management of the entire process by Sam Neal and the entire team at Thomas Morris St Neots.
Without these ultimate professionals I know for certain this would not have happened and I wouldn’t have achieved what I have for our family over the past 6 months.
I feel I have moved heaven and earth (literally) to get our family into a house which not only caters for Samson’s needs, but also is comfortable and will be a lovely home for us all.
There will be a time in the next few years that Samson comes off his feet, when that time comes, he knows he has everything in place to access his home in his powerchair.
When his needs change and he uses night ventilation, there is space for me to sleep downstairs to keep an eye on him. When he needs 24 hour PA care, there will be space and the wet-room to enable him to fully access everything he requires for personal care. He can do gardening as there are raised beds in the garden accessible from a widened path. He can drive straight into the house through both front and rear access. He will be able to get into town easily, see friends and get to college which is just down the road. There are so many aspects which will help him live his very best life and I could not be prouder to have achieved this for him and for our family.
Are you going through this process?
Navigating adaptations or making the choice to move is such a tough road but the hard work pays off. If you are going through this yourself at the moment as a Duchenne parent or carer, keep positive, ask for help if you need it and with the right team around you, you can do this!