Help find a cure for Raff and CDKL5

Thank you for visiting my fundraising page! Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts. Raffael Bruna was born, apparently typical, 18th August 2014. At 9 weeks of age Raff had his first seizure. They quickly became more frequent and longer in duration and the seizures even changed over the months and years. A diagnosis of CDKL5 was eventually found through sending DNA to America for testing. Raff is now 2 years old and is developmentally less than an 8 week old baby. This life-limiting disorder is very rare and even more-so for boys. It results in difficult to control seizures, gastro-intestinal problems, sleep disturbances, breathing irregularities, bone and joint problems, low muscle tone, autism features, sight problems and many other issues. Many specialists were involved and numerous medications have been trialed unsuccessfully. He is about to start the Keto-genic diet which is an extreme diet consisting of 90% fat to try and get seizure control. Other natural therapies are also being used to support him as best as we can. Raff has CVI (cortical visual impairment) which means his brain can’t interpret what he sees very well. He cannot talk or sit or walk. He sometimes eats a little puree and drinks from a bottle but we are relying more and more on tube feeding to stop him losing weight. If we could get his seizures under control then maybe he can have some quality of life and maybe he can start to develop. There are a lot of great people out there doing research to find a cure and there are some wonderful possibilities that will hopefully be realised over the next few years. One being protein replacement and another being gene correction. Raff is a beautiful boy and I would love to see him smile purposely or take an interest in things. We have yet to see much personality and, at the moment, Raff is either lying somewhere, crying, sleeping or having seizures. I am striving as hard as I can to give Raff some quality of life and relief from seizures. I am doing my part to raise money to help Raff and others with CDKL5 so that they can have an opportunity to be happy and live a better life without seizures. Many thanks for your support Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

Donations ()

  • Zen P 
    • $20 
    • 6 mos
  • Nick De Stefano 
    • $150 
    • 16 mos
  • Iain Dykes 
    • $100 
    • 16 mos
  • Anonymous 
    • $250 
    • 16 mos
  • Peter Buchanan 
    • $50 
    • 16 mos
See all

Organizer

Simone Leembruggen 
Organizer
Geelong West, VIC
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