As a newborn, Ethan Schandl had severe reflux and troubles eating, sleeping and feeding.
His mother Fiona Schandl was sent home from the hospital without an explanation, told only that her baby was failing to thrive. Three years of testing eventually led to a diagnosis for the Schandls, but one that offered little relief from their daily struggles.
Ethan is allergic to food.
Now five years old and just 15 kilograms, Ethan lives off a diet of broccoli, cauliflower, potatoes, squash, yams, applesauce and hypoallergenic formula.
“It’s an ongoing battle,” Schandl said of her son’s eosinophilic esophagitis. “It’s something that he’s going to have to live with forever. It’s not a static condition either, so these six things that he has tested fine for could turn on him at any point.”
Ethan works with a host of medical professionals for issues related to his allergies, as well as one weak leg and core muscle issues. The Schandls have long been connected to a team at the Children’s Health Foundation in Saanich, from occupational therapists and physiotherapists to speech pathologists and dieticians. This year the foundation’s Bear Essentials program gave $1,000 toward horseback riding lessons for Ethan, a therapy intended to strengthen weak muscles, a result of his nutrient deficiencies.
The sessions yielded unexpected results for Schandl.
“It gave him an activity for him that wasn’t food related, that didn’t need a lot of energy,” she said. “He absolutely loves it. It’s his special time, a time that he’s able to control things. With his diet, we very much control it, but with the horseback riding, they let him take the lead and tell them what he wants the horse to do.”
Ethan is currently trying to eat chicken, beef and oats. Schandl had added pork and corn to his diet, and both caused adverse reactions. Each time new food trials begin, so do the rounds of scopes and biopsies to determine whether or not his body will accept the foods.
He has already endured 12 procedures, including several biopsies performed under general anaesthetic.
“When he wakes up, he doesn’t like to eat and he doesn’t like to drink. We typically stay in the hospital for longer than most kids would for a procedure … because he won’t let enough liquids in to get the IV out. This last one, he almost passed out when the IV came out. That was pretty scary in itself.”
Despite the ongoing hospital stays and the physical challenges his leg presents, Schandl says her son is altogether pleasant to be around.
“He’s lovely, happy and smiley and super funny. He suffers a lot, but you really wouldn’t know it to see him.”
The Children’s Health Foundation of Vancouver Island is one of this year’s recipients of funds from Black Press’ annual Pennies for Presents campaign, along with the Victoria Salvation Army. From now through Christmas Black Press is collecting donations – in the form of pennies, nickels, dimes, quarters, bills and cheques – at the Black Press office at 818 Broughton St. Collection jars will also be placed at businesses throughout Greater Victoria over the course of the campaign. Pennies for Presents is an Island-wide initiative, but all the money raised here stays in Greater Victoria.
Donations to the Pennies for Presents Campaign can be dropped off during office hours (8 a.m. to 5 p.m., weekdays) throughout December or at any of the following businesses.
Mayfair Flower Shop - Suite 158-2945 Jacklin Rd Langford
Quality Cobbler - Suite 140-2945 Jacklin Rd Langford
Corona Foods - 2155 Sooke Rd
Dodds Furniture - 715 Finlayson Street Victoria
Heirloom Linens - #380-777 Royal Oak Drive
Red Barn Market - 751 Vanalman Avenue, Victoria
Red Barn Market - 5550 West Saanich Road, Victoria
Red Barn Market - 5325 Cordova Bay Road, Victoria
Peppers Foods - 3829 Cadboro Bay Road, Saanich
Oak Bay Pharmasave - 2200 Oak Bay Ave. Oak Bay
Salon Modello - 2590 Cadboro Bay Road
Slater's Meats - 2577 Cadboro Bay Rd, Oak Bay
Verico Select Mortgage - 105-1497 Admirals Rd, Victoria
Verico Select Mortgage Westshore - 3212 Jacklin Road
Verico Select Mortgage - 1925 Oak Bay Avenue
Verico Select Mortgage - Suite 110-4460 Chatterton Way
Brick Langford - Suite 500-2945 Jacklin Rd
Capital Iron - 1900 Store Street Victoria
4Cats Art Studio - 2279 Bowker Avenue
Standard Furniture - 758 Cloverdale Ave
Feys+Hobbs Canteen - 2249 Oak Bay Ave.
Goldstream Food Market - 976 Goldstream Ave.