Our current house is simply not big enough to keep Sophie safe and meet her ever evolving physical needs. The layout of the house also completely limits Sophie’s independence.
The extension will provide the much-needed space required to allow us to store all her essential equipment. Sophie currently cannot use her power chair within the house due to the limited space and narrow door frames, she currently has no independence inside the house and if she wants to move around the house is totally reliant on us physically lifting her which will become impossible as she grows bigger.
The entrance to our house is over 2 levels which again causes issues around Sophie getting in and out of the house even with our assistance. This is another issue that will become more difficult the bigger Sophie gets.
Currently Sophie cannot get into the family kitchen as it is too small for her power chair or any of her specialist seating, this means she misses out on activities such as baking with her older sister and everything else around food preparation.
Our current dining room is in the conservatory which has a damp/mould issue so Sophie cannot use this room due to the risk it brings to her respiratory system.
Damp and draughts are an issue throughout the house so the removal of the conservatory and the upgrade to the roof, windows and doors will remove the risks that Sophie faces during the winter months in relation to her health. In the same vein the upgrade of the heating system will allow us to regulate the heating throughout the house more efficiently to assist in the management of Sophie’s body temperature.
Sophie’s current bedroom is very small and cramped due to the size of her specialist bed and medical equipment and will not be practical or suitable for her as she grows into a young adult. The size of her current bedroom would also exclude the possibility of her having a lift which it is foreseen will be required as she grows bigger. Sophie’s bedroom is not big enough for her to play in or store any of her toys in, which is a cause of huge upset for her especially when she sees her older sister and friends playing in their bedrooms.
Bathing/showering Sophie can be required more than once a day and can be a lengthy process, as we only have a standard bathroom this process is becoming unsafe for both Sophie and us as she gets bigger. As Sophie grows, she will need more privacy, the en suite adapted wet room will ensure Sophie’s safety and comfort when bathing and allow her a much higher level of independence while maintaining her dignity.
The main aim of the adaptations is to allow Sophie to not feel restricted and unsafe at any time within our family home.
Although Sophie has some very complex needs and limitations in her mobility, cognitively she meets all her milestones and is a very bright and determined young girl.
All she wants is to be part of all aspects of family life and move around the house like her sister.
Along with this, the changes around the heating and insulation and the positive effect that they will have on Sophie's health are priceless, Sophie already spends too much time in hospital and any reduced risk to her health will in turn reduce the chance of any prolonged periods in hospital fighting off infections.
We made the decision to go “grant only” to ensure Sophie was able to be involved in as much of our family routine while at home as possible. Local authority adaptations would of built Sophie a bedroom and adapted bathroom on the ground floor at the rear of our current house. This would have provided a larger bedroom and an accessible bathroom but not resolved the other issues we currently have such as her ability to move freely around other areas of the house and her ability to be involved in essential parts of family life.
We feel a local authority build would further isolate Sophie from the family and as a father I would find it unbearable to leave Sophie downstairs at the back of the house at night time whilst the rest of us slept upstairs.
This option would also have taken up the majority of our garden and limited the outside space Sophie has to enjoy which is one of the only activities she can currently enjoy independently with her big Sister.
I appreciate that the way we live our life is different from that of other families however I would not be doing my job as Sophie’s Dad if I didn’t do all I could to limit the differences and make all her experiences the best they can be.
Sophie is our youngest daughter who has just turned 4, she was diagnosed with Spinal Muscular Atrophy type 1 (SMA 1) just before her 1st birthday after we noticed that she wasn’t meeting her milestones.
SMA is a genetic disorder that effects the body’s ability to develop and grow muscles in all of the bodies muscle systems, due to this Sophie has muscle weakness in all her limbs and her respiratory system. Sophie also has weakness in her throat muscles and relies on a feeding tube for the majority of her nutrients.
SMA has no cure but there are some new treatments which aim to increase muscle growth within the body and thus lessen the effects that SMA children have.
Sophie cannot walk, stand or crawl, she can’t sit unaided and tires very quickly from the simplest of tasks. This aside, Sophie is a loving, fun and laughter filled little girl who has a smile that could brighten any day.
Sophie loves to be involved in anything and everything, she often gets frustrated about not being able to do things but simply says “I’ll do that when I’m a big girl“, she has courage and determination beyond her years and has no fear.
Sophie loves to be independent and is a proficient driver of her power chair “whizzy bug”. Sophie longs to be able to move freely and without restrictions around our home just like her sister Amelia.
Sophie loves all the things that 4 year olds love, baths, water, sand and anything messy. Sophie loves ice-cream and chocolate.
Sophie has had many admissions to hospital and at times has been very poorly, we regularly have to attend appointments and she has a rigorous and challenging physio regime. Despite all of her challenges Sophie never stops smiling and very rarely sheds a tear.
Sophie constantly amazes us and what she lacks in physical strength she makes up for in inner strength.
What is the total cost of project?
How much do we need to raise?
Have the local authority provided funding?
Yes. The local authority have provided £30,000 towards the project however this is the maximum they will provide.
How will the remainder of the project be funded?
The remainder of the project will be financed by our savings and personal loans.
Why not move to a bigger house where Sophie's needs would be better catered for?
We moved from a small semi-detached house to a larger semi-detached house to better meet Sophie's ever changing needs. We bought the house due to its bigger size and proximity to Alder Hey Children's Hospital where Sophie has regular appointments. The house is the biggest we can afford that is in such close proximity to the hospital which we have found essential due to Sophie's complex needs.
Is the project future proof and how so?
Yes the project is future proof as we are ensuring that the adaptations will be suitable for Sophie now as a child and in the future as she grows into a young adult. The doors will all be widened to allow her access to all rooms in her power chair, space will be made for a through floor lift to be installed which will allow her independent access to the second floor of the house and the bathroom will be adapted to allow her to use it independently once she is old enough.