Brent, Kendra and Zoey Uniat just before Zoey's surgery. Photo: submitted

Fundraiser started for Castlegar baby with rare genetic disorder

Zoey Uniat was born on Thanksgiving with breathing difficulties

The friends and relatives of a Castlegar family are hoping for a bit of a Christmas miracle.

While 2020 will undoubtedly be remembered by most for the COVID-19 pandemic, Brett and Kendra (Wayling) Uniat, will remember it for the birth of their amazing daughter Zoey, born on October 12, Thanksgiving Day.

Zoey is now 9 weeks old and last week was diagnosed with the rare genetic disorder Congenital Central Hypoventilation Syndrome (CCHS).

When Zoey is sleeping, her breathing becomes too shallow, causing her oxygen levels to drop and CO2 to build up in her blood. Zoey will always require breathing support when she is asleep, so on Dec. 10, she had surgery Children’s Hospital in Vancouver to put in a tracheostomy tube for breathing and a gastrostomy tube for emergency feeding. She is now healing well.

There are a number of serious health concerns that come with CCHS (the NPARMS mutation) but to date, Zoey hasn’t shown any signs. She has a high risk of developing neural crest tumors and will require frequent screening until at least the age of six. For now, Zoey is healthy and happy, other than her breathing.

Brett and Kendra are optimistic about how Zoey is progressing and now start training for her care at home after discharge, which will likely be mid to late January.

Friends and family have rallied behind the Uniats to help make their transition back to Castlegar as smooth as possible. Much support will be needed now, and in the future, to ensure that Zoey has the best life possible.

Hardship has come in many different forms in 2020 as most of us have been affected one way or another by the pandemic and it’s far reaching consequences. What Kendra, Brett and Zoey are dealing with is a life altering genetic syndrome that will require strict 24-hour monitoring for the foreseeable future and unfortunately, ventilation for life. The family will be looking for nursing support for overnights.

A fundraiser has been created to support the family on their incredible journey. As Christmas fast approaches, please consider helping out by donating whatever you can to bring this family home. You can donate to the “Help bring Zoey Uniat home” Go Fund Me page or by direct e-transfer to:

Submitted by Kere MacGregor