When someone you love gets diagnosed with a devastating illness, you cry, you try to process and then you ask "What can we do?". You don't expect to hear that there is no cure and that treatment is only for symptom management. You definitely don't expect to hear that most kids with NKH won't live to see their 6th birthdays.
The early days with NKH were dark for us, the thoughts and conversations during that time are ones we'd very much like to forget. But we can't. They are part of our story now and one of the reasons why we are raising awareness and raising funds for research.
Within a few days of his diagnosis, Jack started fighting back. His message was clear, "screw you, NKH".
We obviously followed his lead. Jack works his butt off every day, we support him and we do whatever we need to to get us closer to a cure so Jack's endless fighting can stop and he can just be a kid.
As Jack's parents, he is our first priority but a cure for him, is a cure for all the other beautiful souls battling NKH right now. It's a chance to end the pain and suffering they know all too well, a chance for them to live.
It's hard to put in to words exactly what it means to have so many people in our corner, fighting alongside us. All you generous, hard-working, loving humans, THANK YOU. Thank you for donating, sharing and going out of your way to make ND Day 2023 an incredible success. We feel so proud, so supported and so HOPEFUL, and that's all thanks to YOU.
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