Say hello to one of our friends!

It is KCNQ2 awareness week. If you missed my last post introducing Afton, be sure to check it out!

When you are dealing with a rare disease like this, you end up connecting with people from all over the world.

Today I want to introduce one of our little warrior friends from Brisbane, Australia! Meet Lucas.

(Isn’t he so handsome!!💜)

The following is his short but courageous fight with KCNQ2 written my his loving mom.

This is Lucas. Born in December 2018.

He started having seizures at 24 hours old and was transferred to PICU at Queensland Children’s Hospital after an EEG showed multiple seizures and background encephalopathy.

At 9 days old he was diagnosed with KCNQ2 encephalopathy due to a de novo gene mutation.

(De novo means it wasn’t inherited from a parent but the gene was changed or mutated on its own during formation.)

He had his last seizure at 4 weeks old and was discharged from hospital at 6 weeks.

He has started smiling and cooing but is already showing some motor delays. He is on 3 anti seizure medications.

We don’t know what the future holds for him, which is terrifying but all we can do is love him, go to therapies and hope for the best.

One thought on “Say hello to one of our friends!

  1. What a beautiful baby boy! Praying for him and his family. KCNQ2 is a scary condition and it’s great to have a support group where you can share your journey. Thank you for sharing his story.

    Liked by 1 person

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