Isaac to Disney before he goes blind

Back in August 2021 our hearts were broken & our lives were turned upside down when Isaac was diagnosed with CLN2 Batten Disease. Batten disease is a neurodegenerative terminal illness which means overtime Isaac will lose the ability to walk, talk, eat and see, eventually we will lose our happy, thrill seeking, funny and loving boy.

 

Not only are we saving for more equipment, life experiences, house adaptions and possible sight (or even life) saving treatment abroad one day. (Should this be a possibility for our precious boy) I am desperately wanting to take my precious children to Disney Land in Paris, before Isaacs sight goes completely. It has already started to deteriorate because of this awful disease it is something I’ve always wanted to do but it’s not something that will be possible for us without help. I am never one to willingly ask for help and I do feel very awkward doing this.. but.. to be honest I don’t ever want to look back and have regrets..

 

Our time as a family of 4 is limited and therefore so so precious. Any help anyone can give to help us to provide Isaac with a happy and fulfilling life is so grateful received. Isaac will absolutely love everything about Disney Land - the characters, the parades, the rides (he is a huge thrill seeker!) the huge castle and the magnificent fireworks..  so that is why I am nervously asking.

 

Thank you for any help you can give us. Please get in touch with fundraising ideas or other way you think we might be able to raise funds.

 

Xxx