Back in October 2021, the Passey family world fell apart.
Caitlin’s teachers had noticed she had been struggling with her vision and couldn’t see the classroom board. Other than asthma and eczema, Caitlin appeared to be a funny, athletic, strong minded 7 year old child.
An optician appointment swiftly led the family to an eye specialist and following that appointment were informed that Caitlin, just 7 years old and being one of four siblings, unfortunately had a progressive Cone Rod Dystrophy and would eventually lose her eyesight.
Sadly, a disease that was genetic and may also affect all 4 children.
Juvenile Onset CLN3, also known as Battens Disease starts with rapid vision, followed by seizures, the onset of childhood dementia, loss of motor and language skills and then death.
Consultations took place with leading specialists from all over the UK & the USA who confirmed there is NO CURE and that apart from symptom management, the most important thing was to 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 that the family do now will stay with her the longest. And so began a memory-making frenzy to tick off all a little 7 year old girl’s life wish list.
Caitlin’s condition deteriorated rapidly shortly after her eighth birthday. Her eyesight worsened and she is now registered as legally blind. The degenerative nature of the disease means ‘normal’ life for Caitlin and her family will dramatically change on a regular basis.
She will also start to lose her balance and the ability to walk, so can no longer play football, cycle or go out on her scooter (amongst other things) and ultimately result in her needing a wheelchair to get around in the not-too-distant future.
Caitlin, the 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, meaning eventually her friends will outgrow her and sadly her memory will not move on.
Caitlin is a huge thrill seeker as well as a Harry Potter fan and has already been to The Harry Potter studios, Disney Land Paris, has also had her picture in the Spurs match day programme. Planning a trip to Disney World Florida is currently in hand along with plans to go to Centre Parcs and the challenge of arranging the dreams of a 7 year old girl to meet Daniel Radcliffe, the Ninja Kidz, and see Katy Perry live in concert.
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, the Passey family will be doing none of this. Instead, the devastating reality will be looking at covering the costs of specialist mobility equipment and sadly, a funeral.
Along with all of the emotional and physical challenges, comes numerous challenges with the current house layout.
Permission to increase the size of the house has been now approved to give Caitlin a room of her own, creating a safe and functional living space 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 currently shares with her five year old brother.
Part of her condition is that her brain cannot process too much information or noise and as a result she becomes overwhelmed. Having a space Caitlin can call her own would mean that she has somewhere to retreat to when she is struggling. This helps give relief to the family for when she can emerge feeling better and so the bond with her brothers and sister can hopefully flourish again.
The safe and functional spaces needs to be big enough that as her needs change she will still have the space for specialist equipment, a large bed and “den” areas where she can take time out. Ideally space too for her parents to join her in her room on nights when she struggles to settle, or her seizure activity is not controllable.
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.
Significant alterations need to be made to the house, including a loft conversion, lift installation and garage conversion to ensure the family have enough space for all the specialist medical equipment required. These changes will keep her home as a safe haven.
Unfortunately, research into this has shown that the finances required to complete the renovation works to the standard needed are way beyond the family’s reach, leaving them in a position whereby asking for support by kind donations is the only option.
The Passey family has been overwhelmed by the amazing support to date from wonderful people within their community both people they know and some they have never met to reach a target of £200,000 to enable them to make the much needed house modifications. Offers to help with the sections of the house build have been received including specialist help with architectural plans – like their very own DIY SOS, some of which are detailed along with updates on the dedicated Facebook page SafeHaven4Caitlin.
More information on Caitlin’s condition can be found on the link below.
Juvenile Batten Disease: type CLN3