top of page
  • Tarah OSullivan

Faith, Hope, Cure for NKH

In the past ten days we have lost two children to NKH. Two beautiful children ….gone…to a preventable death…… Two families have suffered the worst loss any parent, or child, could experience. To an NKH community of less than 500 worldwide is so very tragic.

NKH kills children…THOUSANDS OF CHILDREN…and it will not stop

until we find a treatment…. until we find a cure for these children.

Please if you have heard of this disease through Drake, or any child’s family trying to raise awareness..please don’t let the awareness stop with you. Help us turn your NKH Awareness into NKH Advocacy.

When a community comes together and stands up for a child… a child that can not fight against the sinking hole of being a minority….a rare, neglected disease… When a community reaches out to a boss, or uses a platform God has gifted them with to support their cause…When a community rallies to the officials and leaders on that child’s behalf… THAT SHOWS A CHILD HE IS NOT ALONE IN THE QUICKSAND SO QUICKLY SURROUNDING HIM. That is how you tangible stand with a family desperately praying for a miracle.

NKH is a deadly disease… it is a cruel disease that only brings pain and hurt.

Please pray for the two families that are holding a blanket instead of their child tonight…. Please pray for the parents, and siblings, that are trying to process laying their baby brothers in the ground, and walking away without them. Please pray for these families to feel God’s grace, and peace even though they are living their worst


If you have heard about NKH through Drake, if you have ever whispered a prayer to the Almighty on behalf of our son, if you have ever felt the pain with us when Drake falls after yet another setback..… please… PLEASE, I beg you to get involved. This journey is so much more than just donations and fundraising. It is about community, its about love, and its about fighting for a little boy that the odds are so stacked against. It is about doing something amazing with the unique gifts and talents God has given each of us to better his kingdom on earth as well as in heaven.

Please don’t wait until you read yet another NKH child’s obituary to wonder if you could have done

something… Could you have been the one that made the difference?…

Please pray we find a cure for NKH… click here to get involved now.

Psalm 34:18

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.”

With social media being an ever changing platform, and some choosing to opt out of it all together, we would love to share our journey with you directly to your inbox.  Sign up below:

Thank you for following our journey!

bottom of page