Aspire Travels: Crusade for Caitlin

12th December 2024

Follow SafeHave4Caitlin here >> https://www.facebook.com/profile.php?id=100083028024040

29th October 2024

Update on Our Journey for Caitlin’s Safe Haven

Earlier this year, we embarked on the Travel Trade Crusade to support Caitlin, who is bravely battling juvenile Batten disease—a rare, life-limiting condition that progressively affects the nervous system. Children like Caitlin experience loss of vision, motor skills, and cognitive abilities, making each day a profound challenge for both them and their families.

Thanks to the incredible support from our community, we raised just ! over £11,000! Yet, we’re still working to reach our original target to fully support Caitlin and her family with critical resources for her care and experiences that bring joy amidst her battle.

To help bridge the remaining gap, we’ve launched a new initiative: a percentage of all commissions from cruise bookings is being donated directly to Caitlin’s Safe Haven. This campaign has brought us to nearly £12,000, but we still need your help to meet our target. Every donation, no matter the size, brings us closer to making a meaningful impact on Caitlin’s journey.

Please consider contributing or sharing Caitlin’s story. Your support not only aids her family but shines a light on juvenile Batten disease, offering hope to families facing this devastating diagnosis.

With heartfelt thanks,

The Aspire Travel Team

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Hello, we're Aspire Travel and we're taking on the Travel Trade Crusade Rally in July 2024. The Travel Trade Crusade is a mad road trip across Europe, travelling across 6 countries in 3 days that raises money for good causes. Only teams from and associated with the travel industry can enter to compete with each other along the way and tick off certain silly challenges. The 5th & final Crusade will be taking place in July 2024 raising huge amounts for charity.

Kelly, Mia and Libby from Aspire Travel have taken on this challenge, in a Fiat 500 and wish to raise £15,000 for 'SafeHaven4Caitlin'. This substantial fundraising goal will enable us to contribute significantly to the developments required as Caitlin's condition rapidly deteriorates. Together, by reaching this financial milestone, we aim to make a difference and uplift Caitlin and her families lives.

Caitlin is a 10-year old sporty, fun-loving and adventurous little girl. She was diagnosed with Juvenile Onset CLN3 (there are just 35 children in the UK with this disease), also known as Battens Disease in October 2021 when the teachers reported she was struggling with her vision as she couldn't see the board. Nothing could have prepared Caitlin and her family for what came next - here they tell their story..

In 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, Oliver then 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, 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.

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 home renovations, 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 younger 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.

The family have created a Facebook page 'SafeHaven4Caitlin' and post regular updates about the renovations, spiralling costs and rapid changes and challenges that they face. Today, £15,000 would help complete Caitlin's bedroom/bathroom and we're appealing to you to help raise awareness and funds.

We have a series of initiatives and ways you can help and support Caitlin:

1. Donate to this Page

2. Book Your Holidays Through Aspire Travel and a Percentage of the Supplier Commission is Paid Forward to Caitlin's Fundraising Target. Read more here >> https://www.aspirecambridge-travel.co.uk/safehaven4caitlin

3. Sponsor Aspire Travel in the Travel Trade Crusade - from a tank of petrol, accommodation, ferry costs, fancy dress outfits - the list is endless! Get in touch with us on 01223 855442

4. Caitlin's Bucket List - Can You Help Make Her Dreams Come True? Read more here >> https://www.aspirecambridge-travel.co.uk/post/cherishing-every-moment-a-little-girl-s-bucket-list-journey

The family know they are going to lose their little girl but we want to make sure she has the most amazing life she can before then.