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Support Richards fight against Diffuse Midline Glioma

  • Wheels are in motion

      11 July 2020

    To mark the end of Richards first week of radiation we have some exciting news to share.

    A specialized senior oncologist from Australia has agreed to review Richards case and offer any possible alternative treatment suggestions. This oncologist has recently been working with hypermutated tumors and immunotherapy treatment, so it will be interesting to see if this will be an option we can consider.

    Adding onto this, the DIPG Centre of Expertise within the Children's Hospital of the University of Zurich has also agreed to review Richards case to see if he meets criteria for their current ongoing clinical trial (or their two upcoming clinical trials).

    So we have a bit of a waiting game to play while we request all Richards medical documents to send off, as well as wait for these specialists to review, but SOMETHING is happening and that’s better than nothing!

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  • Thank you

      6 July 2020

    Hi everybody,

    Firstly, we want to say a massive thank you to everyone that has donated. This totally exceeded our expectations and we are just completely overwhelmed by the response. We are so grateful for everything, please know we appreciate all the support you have given us and we are just so thankful to have such wonderful people surrounding our family.

    Today we were contacted by the WDHB Physiotherapist. They are hoping to come see us on Friday. This is a physiotherapist funded by the district health board. This is wonderful news to us as (as you have read) we were called by the ADHB Physiotherapist last week who told us our referral had been rejected. I’m not sure what got things moving - whether another referral was made or I complained to enough people - but he’s in the system and we are super excited to be able to start getting Richard back on his feet.

    That being said, I want to be really clear that all money that has been donated will still continue to only go towards medical related costs. Now that physiotherapy will be funded we can look more towards getting Richard into the clinical trials in the USA. He has to complete his full 13 radiation sessions before we can apply for this particular onc201 trial in the USA but we will definitely work towards this as a goal and keep up with updates on his progress.

    Thank you again to everybody, we just really can’t express enough how thankful we are.

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    • 06/07/2020 by A

      Hi there

      Im sorry to hear about your husband, but i really felt a need to share a message of hope as i was also diagnosed with a brain tumour at the age of 15 back in 2018 but now im much better. i just ask you to consider praying to jesus and getting in touch with a church minister/pastor so they may pray and offer your family any help. I understand how hard it may be for you and your family, but I believe as He has delivered me, He will deliver you and your family.

      Kind regards

    • 07/07/2020 by Zoe

      Yes! So glad that the physio is being funded now!! On to the USA! Really hope the physio can help with getting Richard walking again ❤