When Colbie was an infant all 6 of us would sing our own rendition of “My Bonnie Lies Over the Ocean” with Colbie’s name inserted.
“Bring back, bring back, oh bring back my Colbie to me, to me…”
It was simple and fun, but I can’t sing this song anymore without getting teary eyed. Who knew that it would come to mean so much more. We have not lost Colbie, of course. I thank God for that every day. But when I hear this song now, I imagine her at a distance, trying so hard to tell us more than she can. Trying to do more than she can, and I wonder if she feels this way ever. I imagine, she may when she is older and I pray this disease doesn’t have a chance to take anything more from her.
We recently participated in the Kif1a.org Family & Scientific Engagement Conference and it was amazing to connect with other parents face to face virtually, and hear from Dr. Chung herself and other researcher partners like Ovid Therapeutics, Rarebase, BioLoomics, and Murdoch Children’s Research Institute. Informative video updates available HERE. There is so much being done and that was such wonderful news to hear. But there is still so much to be done, so much unknown about KAND and the conference relit a sense of urgency in me. We truly are racing time. If a treatment/cure is found, it likely won’t undo damage done, but would prevent future atrophy or regression, so, obviously, the sooner we find it, the better for Colbie and the others diagnosed with KAND.
So now I wonder again, am I personally doing enough and hope to find the time to organize an event or fundraiser soon. I have questioned this a lot and learned that the other parents do too. Are we doing enough for our children’s healthcare, therapies, our families and other children, our marriages, the organization, our jobs, ourselves. I think the answer may always be no if I’m honest. But we are doing our best and doing all we can.
Be on the lookout for fundraiser planning soon or feel free to reach out if you’d like to be involved somehow! Probably after the kids are back in school though because the balancing act has hit a new level this summer!
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