When the annual Variety Show of Hearts telethon hits TV airwaves this weekend, a Chilliwack youngster will be front and centre. Six-year-old Kean (pronounced like Ian) Tinoco is the poster child for this year’s event, sharing his story of adversity and perseverance.
The Lego-loving youth has faced major medical issues since the day he was born. Kean has been diagnosed with autism, asthma, childhood speech apraxia and a seizure disorder. He has proven vulnerable to viral illnesses, which leads to fevers and trouble breathing.
Mom Jenise Tinoco said his life has been filled with a lot of trips to the hospital and near-endless medical appointments. That’s a lot for any kid to deal with. But Jenise describes Kean as a “tough nut” who tackles challenges head on and doesn’t back down.
“He is such a happy little guy and there has to be a lot to take him out,” she said with a laugh. “He has such a good outlook on life. He’s happy and moving until he just can’t breathe anymore, and then he’ll tell me he needs a shot from his (asthma) puffer.
“He’s really into Lego and he’s a huge fan of math and numbers. Hot Wheels cars are a big thing and he really likes his Scooby Doo Playmobil.
“He’s a snuggler too. He likes to sneak in beside you and give you hugs and kisses. He’s just a genuine, funny, adorable guy.”
Kean experiences frequent drops in his oxygen levels during asthma attacks, viral-induced illnesses and while sleeping. That’s where Variety has made a huge difference in his life, providing his family with a portable device called a Massimo RAD5 pulse oximeter which monitors his oxygen levels and heart rate. Rather than clamping onto a finger like a clothespin, these sensors stay on with adhesives and a wrap, and provide more accurate readings than a monitor you might buy from a pharmacy.
Jenise said it’s the same type of device used in hospitals, calling it a “game changer” that gives her some peace of mind.
”Without the funding of Variety and their sponsors it would not have been possible for us to afford the much-needed pulse oximeter and pediatric oximeter supplies for Kean,” she said. “It has made a huge difference having reliable medical equipment that we can use to monitor Kean’s vitals. We are able to set the parameters necessary for monitoring his conditions and have the alarms go off when his numbers go out of those parameters.
“It has made a huge difference for him and our family and we are so grateful.”
Jenise said the first three years of Kean’s life were the most difficult as they figured everything out and he’s made tremendous gains the last three years. There are still lots of challenges, but he has more good days now, with no appointments to keep and more time to spend doing things he loves.
“Grocery shopping, going to the park, visiting Family Place, baking goodies with his mom and staying home playing Lego,” she said, describing an ideal day. “Kean also loves dancing with his siblings while listening to music with a good beat. Music is very special to him. The best days are definitely where we can spend time with family and friends and have no other commitments.”
This is the first time for Kean participating in the Variety Show of Hearts telethon. Jenise looks forward to hearing the stories of other children, and she hopes her son’s story inspires.
For struggling families, she hopes the takeaway is, don’t be afraid to ask for equipment and therapies and things that you need.
“Speak out and be an advocate for your child,” she said. “Don’t be afraid to let people know who your child is and what your challenges are. Sometimes you feel people will judge you, but your families are beautiful. Your children are beautiful and let them shine for who they are.
“And for the people who donate or are thinking of donating, we are really grateful and feel so blessed to have been a recipient. But there are so many other families who are waiting for a lot of different things, so open your hearts and give.”
The Show of Hearts started Thursday (Feb. 23) and continues through Sunday on Global TV. More information and a link to donate can be found online at variety.bc.ca.