Adapted bedroom & Wetroom

We are trying to create a new accessible bathroom and bedroom for our 10 year old daughter Caitlin, after a horrific diagnosis back in October 2021.

(her full story can be found at the end of this post).

We have already obtained a grant of £30,000 from the local authority which we put towards a through-floor lift (£22,000), to give access to her bedroom from the ground floor and the building works for the preparation of the change of rooms,

This work has already exceeded the allocated grant and there is still so much to do, so we are trying our hardest to raise the remaining funds.

Where invoices have been drawn up, I have attached them.

We feel so close, but when I lay it all out, we still seem so far away.

Here is what we have outstanding;

£6250 Labour for installation of wetroom.

£4000 Carpet & installation.

(The invoice for this covers, the boys new loft rooms (these rooms were built to create the space in the rooms which are now Caitlin’s bathroom and bedroom) stairs & landing & as Caitlin’s is the last room, the final bill will be due.)

£293 (aprox)Sliding door & hanging rail for her bedroom.

£169 Physio room door.

(This needs to be done to be signed off by occupational health because of the lift, this is the room which Caitlin’s lift leads into)

£2000 (aprox) Stained glass window.

(This will be the mermaid from HP prefects bathroom. It will be completed in blues and yellows, the only colours Caitlin can see & will be tactile).

£1000

X2 double glazed windows. One with new frame to accommodate the new stained glass & obscured bathroom glass.

????? Harry Potter half sized wardrobe. We had a lady who did these but she has just stopped due to personal circumstances. Her wardrobes were around £380.

(we have still got to source the wardrobe but we now have someone willing to upcycle it for us)

£30-40 Marauders Map curtains.

(The ones found are too small so need to source).

(Since our page post, someone has kindly offered to purchase these for us)

???? Deathly Hallows Shelf (Harry Potter)

Since our page post someone has kindly offered to make this for us.

???? 2x air con/heat units. One for her room and one for the physio room. We decided this was the best option because she is super sensitive to the heat & hopefully this will make her more comfortable.

We used a Google search for the approximate cost of an average priced air con unit in the UK for x2 = £4500

We have just recently received a very generous £500 donation which we have taken off the total.

Total still outstanding rounded to £17,700

It has been & still is an incredibly long process, the build has been happening for over a year now. A time we could not have got through with the help of friends/family, amazing businesses & very generous people we have met along the way.

But for Caitlin, she has not only been dealing with the loss of her vision, but has also been navigating/bumping and banging through a constantly changing building site, with no space of her own.

❤️❤️❤️

We are desperate to get her some consistency and give her a safe environment, so she can focus her energy on fighting the changes happening to her brain & body.

Please find her diagnosis story below…..

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 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, at the time Oliver was aged nine, Joseph aged five, and Sophie aged 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, 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 seven 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 two occasions, once it was televised, apparently making her famous.

She has met the woman's England football team and been a mascot for them, which as a footballer herself was just magical!

On Boxing Day, she and her older brother were a mascot for Cambridge United too, which we attended by other family and friends.

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, and we welcomed a new member of the family, Simba, a curly Cavapoochion with the super power of cheering her up when she is sad, which unfortunately happens a lot due to the disease.

She would love a den like one from the Dengineers for her and her friends, she would love to sail around on a cruise ship like the Ninja kids.

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!

Since Caitlin’s diagnosis two years ago, her eyesight has deteriorated so much that she now only has light perception and the ability to recognise blue and yellow out of the very corners of her eyes.

This level of sight loss has caused her a lot of upset, she has painfully grieved for what she had and has struggled to open up with the people around her.

Her biggest wish is for scientists to make a medicine to bring her eyesight back (she has no idea that this is only the start of the horrors to come).

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.

As time goes on our sporty, fun-loving and adventurous little girl has started to lose her ability to play with her friends as she once did.

She will never mentally grow older than around 8 and unfortunately her friends are starting to outgrow her, but her memory will not move on, this thought deeply hurts. Watching her friends grow up and leave her behind is devastating and causes unimaginable pain!

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 were/are way beyond our reach, leaving us in a position where we had to ask for support.

She previously shared a room with her 5 year old brother and her older brother was in the room next to them.

We created a loft conversion, giving Caitlin her own room with accessible en-suite.

To keep Caitlin with the rest of the family we installed a through floor lift.

The through floor lift will give access to her downstairs den/physio space (her bedroom space is limited so we had to take up space downstairs to accommodate this) & to her bedroom and en-suite.

To create this downstairs space we did a garage conversion.

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, 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 

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Batten-Disease-Fact-