Having access can mean so much to so many people. Having a great foundation like ohf is extremely handy as I have met many amazing people who understand what I am going through because of them and I am also able to help them however I can from across the globe. It is because of amazing things like this that one day we can hopefully find more cures for diseases like ours and many others.
I struggle when I was Nepal.i never give up and hope so I am here.i connected with PH family.
I hope to see (geographical) fair and equitable access to treatment and care within the coming years. Access to services that improves overall quality of life for both the patient and parent/caregiver.
We are a community filled with determination and strength. We need to continue to work together to ensure EVERYONE has access to treatment and care for their specific needs, no matter who they are or where they live. This disease affects everyone in the family and can disrupt our lives in ways that are difficult to recover from, HOWEVER we do not have to let it happen without a fight. We are all responsible to advocate for ourselves and our families. Do not settle and never give up. Uncertainty and desperation can motivate us to fight against the biggest challenges. We have a wonderful obligation to each other to keep fighting and pushing forward to ensure we all have the opportunity to live a life free of PH. Lets continue to work together to make good things happen.
This is an abridged submission. Please visit www.hyperoxaluriaweek.ohf.org/story for Kanishka’s full and very powerful story.
In January 2009 – June 2009 a black shadow came to our life with heart breaking news that Kanishka had Primary Hyperoxaluria Type- I. Finally, on 19.1.2011 we received a call from IKEM that Kanishka has been gifted by God for having combined transplantation. On 20.1.2011 very early morning around 5.30 am Kanishka had been taken for his dialysis. But on 19th May 2011 Kanishka didn’t wake up after his dialysis. Therefore, as a bereaved mother I have a request to all the medical practitioners, researchers to identify a better solution than combined transplantation which is really not an ultimate solution. At whatever time I wish to write something about Kanishka the first thing comes in my mind: CARE. He was a very caring personality. To fulfill the cherish idea of a great boy, as a mother and as a parent we established a foundation in 2013 to improve the lives of rare kidney stone disease and Hyperoxaluria for better care and outcomes.
Once again thanks to Kim Hollander for your understanding and giving an opportunity to share our only beloved son Kanishka’s journey with PH.
I am proud and privileged to work along side the PH community and OHF to bring important solutions to the community living with PH!