Special to the Record
Nolin Jutten is a photogenic three-and-a-half year old boy, with long, wispy light blonde hair and ocean blue eyes.
He also has many huge and very unique challenges.
Nolin can’t walk, talk, eat, hold his head up, or see very well, and has seizures and other health issues, the result of a disorder that has no known treatment.
He has low muscle tone throughout his body.
He cannot grab a toy without letting it go.
He plays with his iPad and toys that he can hit, but even this can be a challenge for him.
He has had two operations, one for his soft larynx which was so floppy, he could barely breathe and the other for a feeding tube that goes directly into his stomach since he had a hard time swallowing.
Nolin is constantly getting acid reflux and often projectile vomits. It is easy for him to aspirate, and then develops a lot of mucous, which he again chokes on and puts his larynx into a spasm, which stops him from breathing.
“We have had to do CPR on him a few times and almost lost him,” said his mom Darlene who calls nearby Stave Falls home with Nolin and husband Frank.
“In similar disorders there is not a very high life expectancy. That having said, since Nolin is the only one known in the world to have this, we really don’t have a prognosis, and hope for improvements in the future with new medications, and treatments,” Darlene added. “For now it is considered a palliative condition. We hope that with the current research being done for this disorder will not only be able to help Nolin, but also children in the future who may get this genetic disorder.”
Nolin’s challenges are very complex as all body systems are affected by this disorder, it affects his cells, tissues, brain, kidneys, heart, larynx, trachea, intestines, bowel, and muscles.
For Frank and Darlene, it’s been difficult to get the right kind of support for Nolin, as many people don’t know what to do or how they can help.
“It has been a struggle and we have lost touch with many people. It can be an awkward situation and people don’t always know what to say,” Darlene said. “We have a few good friends who we are still in touch with, and are meeting other families that face the same challenges that we have.”
On June 6, Frank and Darlene are hosting a fundraiser for their son at the Best Western ballroom in Mission.
Proceeds will go towards the many extra costs involved in caring for Nolin, such as wheelchair van, renovations, ramps, and lifts.
There will be a full course buffet dinner and dance with live music by a six-piece traditional New Orleans style jazz band called the Razzmajazz Ensemble.
The fundraiser includes door prizes, a 50/50 draw and a silent auction of original artwork, unique services and items including getaways, gift certificates to spas and boutiques, a one year yoga pass, healing sessions, restaurant dinners and brunches, jewellery, spa products, naturopathic visit, specialty plants, gluten free foods, soaps, a professional photography session, Feng Shui consultation, geopathic stress analysis and more.
A door prize is a three-night stay at Sun Peaks resort.
Tickets to the semi-formal gala are $50 each which includes a six-course meal, and can be purchased at Schuh Boutik in Mission, Zena’s Gluten Free Bakery in Maple Ridge and HOFA Art Supplies in Abbotsford or by emailing email@example.com.