Ruby-rose’s making memories fund
Donation protected
Hi everyone,
As most of you know we are fundraising to make memories for Ruby-Rose 8month old and tyler 5years old, as ruby has been diagnosed with a mitochondrial disease called megdel and isn’t expected to live past infancy. With Rubys diagnosis we have learnt that at some point she’s going to revert back to a baby state and her organs begin to shut down until the worst possible outcome happens.
We want to make as many memories as possible as nearly 3 years ago In October 2020 we lost our 9 year old son kyle to DIPG a brain stem tumour and we couldn’t make any memories due to covid.
We want to take our kids travelling across the globe and see and do as many amazing things as we can possibly do and make life long memories for them and us.
We are also in talks with drs from across the world in hopes to find a trial somewhere which could end up costly as there is nothing within the uk on the NHS.
We are trying to raise funds to help towards these memories whilst rubys health is not deteriorating. Any help, donation or share is appreciated and you are welcome to follow our journey on our Facebook group Kyle’s and ruby-rose’s army (dipg and megdel syndrome awareness)
As most of you know we are fundraising to make memories for Ruby-Rose 8month old and tyler 5years old, as ruby has been diagnosed with a mitochondrial disease called megdel and isn’t expected to live past infancy. With Rubys diagnosis we have learnt that at some point she’s going to revert back to a baby state and her organs begin to shut down until the worst possible outcome happens.
We want to make as many memories as possible as nearly 3 years ago In October 2020 we lost our 9 year old son kyle to DIPG a brain stem tumour and we couldn’t make any memories due to covid.
We want to take our kids travelling across the globe and see and do as many amazing things as we can possibly do and make life long memories for them and us.
We are also in talks with drs from across the world in hopes to find a trial somewhere which could end up costly as there is nothing within the uk on the NHS.
We are trying to raise funds to help towards these memories whilst rubys health is not deteriorating. Any help, donation or share is appreciated and you are welcome to follow our journey on our Facebook group Kyle’s and ruby-rose’s army (dipg and megdel syndrome awareness)
Organizer
Craig Evison
Organizer
