Main fundraiser photo

Making Memories for Alex with Incurable Illness


Firstly, we would like to raise awareness of NF2, followed by our goals to make memories and Alex dreams.
 
So, what is NF2? It's short for Neurofibromatosis Type 2. It's a very rare genetic disorder that causes tumors to develop in the brain, spinal cord, and nerves. The condition occurs as a result of a gene abnormality. 
 
These benign tumours can not shrink, they can only slow down so it's incurable. They are commonly known to affect hearing, leading to deafness, and balance issues but in some cases have other affects too.
 
Alex has many tumours in his brain, eyes, and spine. His hearing is going downhill, however, we now have special hearing aids which are brilliant. We are still planning to learn sign language because he has a very real possibility of losing his hearing and/or vision overnight completely. People may not know this but hearing affects balance too, which as you could imagine he has issues with at times too.
 
He is a little boy who has a heart of gold and loved by everyone who meets him. He's very compassionate and kind too. He absolutely loves Gaming, everything Cute and Nature too. 
 
I'm not allowed to work as Alex needs special care from me, which is partly the reason we started this campaign - money was too tight to plan trips, but thanks to family, friends, people we've never met before, and companies - we can make some awesome memories!
 
Once we reach our target and make these memories, we will keep some in reserve for adaptions that need to be done. After that we will be donating the remains to Childrens Tumour Fondation. ❤
 
Thank you, The News for starting our campaign - read Alex story; https://bit.ly/3wikZB6
 
Please spread awareness of NF2 everywhere, it's extremely rare for people to know about it and we want everyone to understand it.
 
We will keep this updated with any news, pics/vids along the way! Thank you so much from all of us!
 

Updates since the start of this campaign:

 

  • Alex has met a music YouTuber he likes and can't wait to see the video. Alex has his channel ready to be started very soon too.
  • We have had an amazing 3 day trip to London and had fun at Harry Potter World, and Legoland!
  • Alex has been surprised by an amazing Reign PC donation by Novatech and launched his YouTube channel! https://youtu.be/IutuBCFP2BE
  • We went to Butlins, it was a lot of fun but we noticed Alex changed a lot since 3 years ago. He felt tired halfway through each day and we came home a day early as it was all a bit much. We decided for future holidays to places like Butlins to just do a day pass or maybe 3 days max.
  • Alex tumours have grown, and hasn’t had his Chemo for a few months due to issues with his Port and needing surgeries. He has lost complete vision in one eye.
  • We found out he has nerve damage and his mobility has gone down a bit and had to use his wheelchair for the first time a few days ago for a medium journey.
  • His Chemo has started back up which is brilliant, he has also maintained the same hearing levels too.
 
 
 
Our last goal: We would like to be able to do a nice Christmas but funds are short after us putting money towards some of Alex trips too.
 

We want to say an extra special shout out to Mark Hewitt who has helped tremendously and Abby Hislop too. ❤️ We also want to shoutout how amazing Finli Draper has been too

 
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Donations 

  • Fiona scovell
    • £10 
    • 2 yrs
  • Bernard Handstanger
    • £5 
    • 2 yrs
  • David Niemynski
    • £15 
    • 2 yrs
  • Andrew Eveleigh
    • £5 
    • 2 yrs
  • Aidan O'Neill
    • £10 
    • 2 yrs
Donate

Organizer

Shaun Hoare
Organizer
England

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