Luka’s Story: Courage, Resilience, and Life with NKH
- Feb 25
- 1 min read
Luka is our second wonderful son out of three amazing boys.
His start to life was much different than our other boys.
He never woke to eat nor cried.
After almost losing him and pursuing a diagnosis for over a year, we finally learned he had NKH. Luka is nothing short of the definition of brave and resilient. On paper, we should have lost him multiple times. But this wonderful boy, he doesn’t give up or run when things get hard.
He will be FOUR this year!!
We recently elected for him to get a tracheotomy, since we spent 121 days inpatient last year, and a majority of those were due to respiratory failure. While the trach has come with its own share of difficulties, it has helped him tremendously to breathe and fight off illness!
While I wouldn’t wish this disease on anyone, Luka and his life with NKH has taught our family so many things.
He’s taught us what really matters in life: family.
He’s taught us what strong really looks like.
He’s taught us determination and to not give up the second things get hard.
He’s taught us how to adapt and learn new things.
He’s taught my other boys compassion and to never count out the underdog.
And we are so very lucky to have him in our lives.
To our family, Luka has hung the moon and stars. He’s our Mr. Wonderful and always will be.
—Shannon, Mom, Caregiver, Advocate
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