Creating a Safe Haven for Caitlin

Last October, 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 board. 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 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 October 2021, only 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, followed by seizures, the onset of childhood dementia, loss of motor and language skills and then death.

This couldn't be right, she was a perfect seven year old, other than asthma and eczema, she was right on track, funny, athletic, strong minded.

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 DisneyLand Paris, and are in the process of trying to plan DisneyWorld Florida. She had her picture in the Spurs match day programme, apparently making her famous.
She wants to go to centre parks, would like a den and a room just for her.  She has also insisted on meeting Daniel Radcliffe, the Ninja Kidz, and seeing Katy Perry live in concert, all things less easy to arrange!

Shortly after Caitlin's diagnosis she turned eight and things have been going rapidly downhill.

Her eyesight is deteriorating and she is now registered as legally blind, 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 will dramatically change 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 will lose her ability to play with her friends as she currently does. She will never mentally grow older than she is now, so eventually her friends will outgrow her, but her memory will not move on, this thought deeply hurts. Watching her friends grow up and leave her behind will be 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.

Along with all of the emotional and physical challenges, comes numerous challenges with our current house layout.

We have permission to increase the size of our house to give Caitlin a room of her own, creating a safe and functional living space for her and providing her with the space she needs to get away from the noise and craziness in a house with three siblings and the room she shares with her five year old brother.

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.

It needs to be big enough that as her needs change she will still have the space for specialist equipment, a large bed, den areas where she can take time out. Ideally space for us to join her in her room on nights she is not settling or her seizure activity is not controlled.

Having lift access means that 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.

We will need to make significant alterations to the house, including a loft conversion, lift installation and garage conversion to ensure we have enough space for all the specialist medical equipment required. These changes will keep her home as a safe haven.

Unfortunately, our research into this has shown that the finances required to complete the renovation works to the standard needed are way beyond our reach, leaving us in a position where we have been advised to ask for support.

If you know of anyone/any businesses that may be able to help 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 
Raised £7,514 from 41 donations
Nick Passey 
Team member
Raised £1,868 from 47 donations
Nina Fenemore 
Team member
Raised £10 from 1 donation