Memory Making & Accessible Sensory Garden Makeover
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On 7th October 2021, our world fell apart!
It was first brought to our attention that Caitlin maybe struggling with her vision when her teachers told us she couldn't see the whiteboard. We took her to the optician, and were ultimately referred to an eye specialist.
Following that appointment we were informed that unfortunately Caitlin had a progressive form of Cone Rod Dystrophy and would eventually lose her eyesight. She was just seven years old. How could this be happening?
Not only that, but she would need a genetic test as it may be a fault that could have been passed to our other three children. Horror and fear set in, so we made the decision to get them genetically tested.
First they had to find the gene in Caitlin (this is not always possible) in order to look for it in the other three, Oliver, Joseph, and Sophie.
We sent off the swab and the wait was agony. Finally we received an email (yes, an email!!) from the consultant, what it said would change our lives forever!
Unfortunately Caitlin had Juvenile Onset CLN3. Also known as Battens Disease. We had never heard of this before, but the tone of the email made it obvious it was not good.
A quick Google search and our hearts sank.
Rapid vision loss was the first symptom, the onset of childhood dementia, followed by seizures, loss of motor and language skills and then death!
This just couldn't be right, she was a perfect 7 year old, naturally gifted at all sports, a joker, a normal strong minded little girl.
Several emotional phone calls later confirmed that unfortunately this was really happening to our little girl. She is going to die much MUCH sooner than anyone would ever have hoped! But first she is going to be stripped of everything that makes her, her. Suffering in a way we wouldn't wish on anyone.
Our hearts broke in two!
We spoke with the leading specialists from all over the UK & the USA who told us, there is no treatment & NO CURE!! Meaning that, apart from symptom management, the only thing we could do was make memories.
We were told that due to the dementia aspect of the disease, Caitlin's long-term memory will be one of the last things to go, so anything and everything we do now will stay with her the longest. This sent us into a memory-making frenzie trying desperately to tick off all of our little girl's life's wish list.
Caitlin is a huge Harry Potter fan so we have already taken her to Harry Potter studios which was a MASSIVE hit.
She is also a huge thrill seeker, so a lot of her wishes revolve around theme parks. We have ticked off Alton towers, DisneyLand Paris & DisneyWorld Florida where the Harry Potter area was an unbelievably HUGE hit!
Caitlin LOVES football and was buzzing to have her picture in the Spurs match day programme, followed by becoming Harry Kanes mascot on 2 occasions (once it was televised, apparently making her famous). She has also been mascot for Spurs Ladies captain, Bethany England and was given her match worn shirt after the game.
She has met the woman's England football team and been a mascot for them at Wembley, which as a footballer herself was just magical!
We have flown to Germany to meet Ed Sheeran, and danced the night away at his concert. We are even in the top 0.5% of his fans on Spotify, that’s over 32 hours of listening time in our house, so that was a big one!!
We have been taken to centre parks with family and shared some wonderful times.
She would love a den like from the Dengineers for her and her friends, to sail around on a big cruise ship like the Ninja Kidz.
She is still absolutely desperate to meet Daniel Radcliffe along with the Ninja Kidz (she has received videos from both of them) and would love to meet Katy Perry and George Ezra and see them live in concert, all things less easy to arrange!
Shortly after Caitlin's diagnosis she turned eight and things went rapidly downhill.
Her eyesight has now all but gone and is essentially down to just light perception something that causes her a lot of upset, even asking if the spell 'Occulus Repairo' from Harry Potter would work to fix her eyes!
The epilepsy side of the condition has now set in, we currently have this under control with medication, however there is unfortunately no guarantee that this medication will always work.
Due to the degenerative nature of the disease, 'normal' life for Caitlin and our family dramatically changes on a regular basis.
She will also start to lose her balance and the ability to walk, meaning she will eventually have to give up playing football, something she still manages to do with the use of a special "bell ball". She has now lost the ability to cycle and go out on her scooter, 2 activities that she truly loved.
The sad reality is she will ultimately be needing a wheelchair to get around in the not too distant future.
Over time our popular, sporty, fun-loving and adventurous little girl is losing her ability to play with her friends as she once did. She is not mentally growing up as quickly as her friends and devastatingly they are beginning to outgrow her, the sadness & lonliness she is clearly feeling hurts so deeply. Watching her friends grow up and leave her behind is absolutely devastating.
Whilst most parents will be planning for a future where they need to help their child with university fees, house deposits, driving licenses and wedding costs, we will be doing none of this. Instead, the devastating reality is we will be looking at covering the costs of specialist mobility equipment and a funeral.
As part of her condition her brain cannot process too much information or noise and as a result she becomes overwhelmed and acts out. Reasoning with her is impossible and we just have to ride it out.
Having a bedroom Caitlin can call her own means that she has somewhere to retreat to when she is struggling, which she does when she feels she needs to. This also gives relief to everyone else in the family as it means she can emerge when she is feeling better and bonds with her brothers and sister are once again flourishing. It has also meant we were able to get her a double bed, so one of us could share with her in her room on nights she is not settling or her seizure activity is not controlled. We have also been able to give her an accessible en-suite with space for a hoist system for the future.
Outside of her room our entire home needed to be modified & extended to make sure it is big enough for specialist equipment. We have been able to install an area where she can remain active with plenty of equipment for her to keep up her core strength. The hope being that the more active she is then the disease will progress slower.
Unfortunately, although we remortgaged the house and put all of our savings into memory making and the renovations, the finances required to complete were beyond our reach, which left us in the enenviable position of needing to fundraise.
Before the renovation Caitlin shared a room with her younger brother and her older brother was in the room next to them. We moved the boys out and up into a loft conversion, allowing us the space to create Caitlins room with accessible en-suite.
To make sure Caitlin is able to maintain access to the whole house and stay fully involved with the rest of the family (with as much independence as possible) we have installed a through floor lift, so when her mobility starts to fail her, she can still be in a familiar space, one she remembers from when she still had usable vision.
The through floor lift gives Caitlin access to the downstairs den/physio space directly from her bedroom. To make this possible we had to knock down our garage and build a new living room.
These changes will keep her home as a SafeHaven and keep us all together as a functional busy family home.
Now the inside is so close to being finished, we are in the process of transforming our outside spaces into a safe, accessible, sensory haven.
Caitlin may have lost her vision but she is very in tune with her other senses and having a space that has things to touch, hear and smell will very calming.
We are extending the driveway to allow a clear path to the front door, with tactile markers for Caitlin. We are also raising the level of the driveway closer to the house to create a level threshold with the front door, as well as installing a handrail to make it as easy as possible for Caitlin to access her own home. This will also future proof the entrance for wheelchair access.
The garden has been raised at the back of the house to allow level access to the back garden, with a patio and sunken trampoline (Caitlin LOVES to bounce on trampolines).
We would love to add some sensory aspects such as a water feature or raised pond, an area to grow various edible plants and herbs. Lots of different plants to attract different varieties of wildlife and the sounds they bring with them.
The renovation process has taken close to 2 years with a lot of stress and tears along the way, however we believe we are now close to the finish line and can hopefully start making more memories.
We know we are going to lose our little girl and Battens disease is going to rob her of so much, but we are determined to not let it ruin the time we have so we desperately want to make sure she has the most amazing life she can before then.
More information on Caitlins condition can be found on the link below:
Juvenile Batten Disease: type CLN3
Organizer
Naomi Passey
Organizer
England