PLEASE READ THE UPDATE AT THE END.

I left the original story here, so everyone can see our original intention and plans.

We took my Daughter Ashleigh at age 4 to the optician as we noticed her eye turning in, he then referred her to the hospital - after some time she was eventually diagnosed with Neurofibromastosis Type 1 (NF1) and an Bilateral Optic Pathway Glioma (A Brain Tumour that is on the Optic Nerve)

The condition NF1 is a genetic condition (in her case spontaneous, meaning she did not inherit it from myself or my husband). A person with NF1 develops Tumours on their nerve endings, among other issues such as Skeletal Abnormalities and Learning Behavior Issues.

NF1 is progressive with no cure.

Because Ashleigh’s Tumour was growing and had greatly affected her sight in her left eye she had to start Chemotherapy at age 5 which lasted 70 weeks, finishing July 2025. This was to stop the Tumour from continuing to grow to protect and keep her eyesight, it can also cause other issues, such as hormonal issues.

During this time what made Ashleigh happy was when she was feeling well enough and her chemo schedule allowed her to, was to take little family breaks, she loves holiday parks where they have kids clubs and lots of children’s activities, it’s her absolute favourite thing to do, and it gives her fun quality time with her family. During treatment we cannot travel too far and must be near a hospital as if Ashleigh gets a temperature of 38 or above she must be in hospital and on IV Antibiotics within the hour, incase she has developed an infection.

Unfortunately in May this year (2026) we received the news that Ashleigh’s Tumour has actually started to grow again, so she is now having two different Chemotherapy’s for a course of 81 weeks, again in the hope that the Tumour will stop growing and her eyesight will not be affected further, with little vision in her left eye it’s super important that we try to stop any worsening of vision in her right eye, and unfortunately surgery poses a high risk of full eyesight loss.

It’s hard to save money when you are in a situation like this, as so much time is taken up with hospital visits and looking after Ashleigh when she’s unwell, it’s impossible for both parents to work full time. I have now myself stopped work, it’s too difficult to know what days Ashleigh will and won’t be ok, my husband works full time as much as possible, but there are also times when she just needs both of us or when one of us needs to be there for our other children’s needs.

Ashleigh is one of those kids who is an avid you tube lover (she’s asking to start her own channel soon) and she loves watching American kids channels and her dream is to visit Florida and the Magic of Disney.

We know a holiday abroad would not be possible for us until after she finally finishes these 81 weeks, depending on any treatment delays this is likely to be between December 2027 and February 2028). We then need to allow time for her to recover and have her port-a-cath removed.

Originally we were thinking something like Spain or Greece sometime from April 2028 onward, somewhere that we may be able to save and pay for, and we never contemplated that a Disney Florida trip would be a possibility - as a family of 6 we just cannot afford a dream trip like that.

BUT through an amazing charity this could become a reality - along with the help of others

In Florida there is a place called Give the Kids the World - it’s a wonderful villa complex set up with swimming pools, it has entertainment, shops, and its all inclusive, they provides week long stays for children with serious life long or life limiting conditions and illnesses - and their immediate family.

On and top of how amazing the complex already is - tickets to Disney and Universal Studios are included in this trip.

If as a family we were to find an all inclusive accommodation for a week and buy theme park tickets for all of us, it would be somewhere in the region of £10000, or potentially more, which cuts the cost of the whole trip to about half of what it would usually cost a family like ours.

It feels too much of a once in a life time opportunity to not try to make it happen, nor just got her but her sisters too, as going through something like this really does affect everyone in the family.

And for Ashleigh, who's eyesight is not forever guaranteed, is this treatment works we will be so happy, however we are aware that, like before it could start to grow again in the future, quite often this can happen around times of hormonal changes, like your early teens. Ashleigh will be 9 at the end of this round of chemo, and I want to make sure she has been to and seen something amazing and magical, before the possibility of anymore treatment, because we just don’t know what the future holds, and if she was ever unfortunate enough to lose her sight, she would have seen some amazing things and hold amazing memories.

And we would love for her sisters to experience such magic too because they have been great through everything, it is hard seeing a sibling go though this and have so much of your parents focus and attention have to be shifted toward one person, ans having that constant worry about your little sister, they deserve an amazing experience too.

Here’s where we need help

As mentioned the first weeks amazing accommodation and most food will be covered plus theme park access 🥰

We ourselves need to fund the flights, car hire, villa for a second week, food, spending extras and insurance.

Which I think realistically we are looking at a minimum £7000, however if we could raise more we would be able to get little extra treats and not worry about spending.

It does feel to me like it may be too much to ask, but I don’t think we will ever be given an opportunity like this again, and i cannot imagine her face and her sisters faces if I could say -

Once Ashleigh has got through this second lot of Chemo - guess where your going 😱

UPDATE

We have had some disappointing news .

Give Kids the World have changed requiring all bookings to be 100% Wish Granting Organisation funded, the charity sending us is a small charity, that previously accessed the village on a part family funded arrangement, and don’t have the funds to cover the cost of transport, insurance and the Give Kids The World Support fee (which was always third-party fundraised previously) which is the part we were originally trying to fundraiser for -

This means that 100 families including us and 100 more on the waiting/cancellation list have been given the news that we can no longer go!

The charity we were going though are understandably upset as they have been offering this trip for over 35 years and for so many families this is the only way that they can access this kind of once in a lifetime trip to make those magical memories.

As far as I can tell no other UK charities (even the ones listed on the Give kids the world website) are doing this trip currently - meaning that there is no longer any access for any children from the UK to have this magical holiday.

We have decided we are still going to try and fund the trip ourselves through fundraising - after watching how much she’s going through I just don’t want to let her down - this does however mean we have to raise the target by double and I do feel like it may not be an unachievable however we are going to try.

I just need to make people aware that if we can not raise enough for the American Dream Holiday then we will still take her on a magical holiday but we may have to choose a different location that fits the funds -

However the most important thing is that after she goes through all this again we get her say for some quality time, making memories, having fun with no chemo and no hospitals - as we don’t know if or when she will need it again.

If you are not in a position to help us with this dream I completely understand, and there is something you could kindly do for free , and that is if you could help raise awareness of Neurofibromastosis Type 1 by just telling one person about Ashleigh, who doesn’t know about NF1 that would help us spread awareness and would be just as appreciated, as NF1 is known as the most common unknown genetic condition.

A share to your socials, friends and family of this fundraiser would be super appreciated!

Thank you so much for reading.

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