Creating a Safe Haven for Caitlin
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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 now age nine, Joseph age five, and Sophie age two.
We sent off the swab and the wait was agony. Finally we received 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 couldn't be right, she was a perfect 7 year old, naturally gifted at 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 was going to die, but not before stripping her of everything and making her suffer 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 CURE and that apart from symptom management, the only thing we could do was make memories.
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 a HUGE hit!
She first had 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 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 cruise ship and she talks about getting a new dog (ours has sadly passed) to cheer her up when she is sad.
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 all but gone and is now 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!
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 have to give up playing football, cycling and going out on her scooter (amongst other things), with her ultimately needing a wheelchair to get around in the not too distant future.
Over time our 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 and her friends are beginning to outgrow her, but her memory is not move on, this 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 space Caitlin can call her own would mean that she has somewhere to retreat to when she is struggling. This should also give relief to everyone as it means she can emerge when she is feeling better and bonds with her brothers and sister can hopefully again flourish.
Our home needs to be big enough for specialist equipment, a large bed, Ideally with space for us to join her in her room on nights she is not settling or her seizure activity is not controlled. A den area where she can take time out, preferably with space for physiotherapy equipment to keep up her core strength and an accessible en-suite with set up for a hoist system for the future.
Unfortunately, our research into this has shown that the finances required to complete the renovation works needed are way beyond our reach, leaving us in a position where we have been advised to ask for support.
She currently shares a room with her 5 year old brother and her older brother is in the room next to them. We will need to move them out and up into a loft conversion, giving Caitlin her own room with accessible en-suite.
To keep Caitlin with the rest of the family we need to install a through floor lift, then 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 will give access to her downstairs den/physio space (her bedroom space will be limited so we had to take up space downstairs to accommodate this) to her bedroom and en-suite, finally, a garage conversion to create our new living room.
These changes will keep her home as a safe haven and keep us all together as a functional busy family home.
If you know of anyone/any businesses that may be able to help, whether that’s with materials, furnishings for the build or if they are looking for someone to sponsor then please please share.
We know we are going to lose our little girl but we 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
Fundraising team (3)
Naomi Passey
Organizer
Nick Passey
Team member
Nina Fenemore
Team member