Kai’s 3rd Birthday - Gene Therapy Fundraiser

Kai’s third birthday is coming up on Sunday 3 September and oh boy.. how this little boy rocked, changed but mostly enriched our lives. Friends and family have been asking me what he wants for his birthday. Besides hugs, walks in the park in his walker and unlimited Cocomelon there is only one thing I wish for… to cure CTNNB1, for Kai to one day run in the park, to hear him say mommy and daddy to play games with his brothers and enjoy his life freely like every little kid should…

Kai was born perfectly healthy. It wasn’t until later in his first year when he didn’t meet his milestones we got worried. This led us to the pediatrician, early intervention and eventually genetic testing. I will never forget the first words our neurologist told us when Kai was 15 months old: “Im sorry, but we don’t know if Kai will ever walk, talk or live independently”.

Kai was diagnosed with CTNNB1, a severe neurodevelopmental disorder caused by disruption of the chromosome. Basically it means that the spelling of the chromosomes is incorrect. The symptoms are intellectual disability, motor skills delay, severe speech impairment, hypotonia with progressive hypertonia/spasticity, microcephaly, visual impairments and behavioral abnormalities like autism, aggression and sleep disturbances. Therefore Kai’s future is unknown because there is no cure for it.

CTNNB1 was first discovered about 10 years ago and currently only 400 children worldwide have been diagnosed. Because this group is small it doesn’t make it an attractive syndrome to work on but luckily there is an amazing foundation run by a CTNNB1 mother that is working on Gene Therapy to hopefully one day have a cure for all these little boys and girls around the world.

Please share, donate if you can and help us cure CTNNB1!

Love,

The Verwest Family

For more information about CTNNB1 and gene therapy: https://ctnnb1-foundation.org/ctnnb1-syndrome/