Could you imagine going through your life with just one out of three of your kids? Well unfortunately for us this is our fate.
Our daughter Kyra and our son Chevan both have a rare genetic disease Metachromatic Leukodystrophy or MLD for short.
Kyra was diagnosed 4 days after her 2nd birthday and at the time I was allready 36 weeks pregnant with Chevan. When Chevan arrived he was able to be tested at birth and we got the devastating results 2 weeks later.
So here we are proud people asking for donations, why? Because we want to give Kyra the best quality of life she has left, we don't know when she will gain her butterfly wings so we want to make the most of what we do have with her and make her as comfortable as she can possibly be.
So chevan was lucky thanks to his big sister she has possibly given him a better chance of life as he was accepted into the gene therapy in Milan (Italy) and he received his new cells on the 31st of August 2018. This isn'ta cure though as there isn't one.
This also isn't just a one off trip to Milan we have to travel back evwry 6 months for the next 8 years for him to get his checkups.
All money raised will be used for the ongoing care for Kyra and the trips back and forth to Milan. Chevan will also be needing physio and things to keep him progressing and to be one step ahead of this horrible disease.
What is MLD?
Its a inherited disease that causes progressive deterioration of intellectual functions and motor skills such as the ability to walk.
Affected people develop loss of eye sight, the ability to speak, hearing loss, seizures, paralysis and will eventually loss awareness of there surroundings and become unresponsive. There is only a 1 in 40000 chance of having this gene and there is a 1 in 4 chances in passing it on to your children.
My wife Tammy has set up a page for our kids for anybody that would like to follow our journey.
Mckinlay's fight MLD.
We appreciate any donations big or small and thank you all so much for your love and support.
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