Rare Disease Month recognized with local Wilmington child

WILMINGTON, NC (WWAY)– February is Rare Disease Awareness Month, and 1 in every 10 American has a rare disease.

8-year-old, Davis Point, is a Wilmington native who was diagnosed with a rare disease called Koolen-de Vries Syndrome when he was just 10 months old.  

The disease makes his muscles weak, which makes it difficult for him to move around. He also suffers from epilepsy.   

To raise awareness to Davis’s Disease, his family, alongside many young professionals, created a film called “Davis Out of the Unknown”, and a foundation called “My Kool Brother”. Both have a goal of developing better medical therapies and treatment options for individuals with KDVS. 

“My Kool Brother” was started about a year ago, after we created the movie “Davis Out of the Unknown”. It came out of a way of wanting to connect Koolen-de Vries with researchers,” said Ashley Point, Davis’s Mom, and President of My Kool Brother Foundation. 

‘Davis Out of the Unknown’ will have its first North Carolina screening next Wednesday, February 15th, from 6-9 at the Lumina Theater in the Fisher Student Center at UNCW.

The documentary is 12-minutes long, and features the Point Family fighting to find a treatment and cure for their son’s rare disease.  

The film has been screened at NFFTY, Scout Film Festival, Austin Film Festival, Beyond the Short, 3 Global Genes Conference and won the Premio Speciale USR-Telethon Award at the Uno Sguardo Raro Film Festival (the European Rare Disease Film Festival) so far.  

For more information on how you can get involved, you can click here.