By Ryan-Alexander McLeod, Special to Black Press
The Variety Show of Hearts Telethon is getting set for its 54th annual event Sunday (Feb. 9), the importance of which is not lost on the Hernandez family.
North Delta’s Emiliano Hernandez has a personality just like any other four-year-old, he loves the feeling of water on his hands, being outside with his brother and loves getting a taste of chocolate ice cream, cheesecake, Nutella and peanut butter – that is, when mom Diana lets him have some.
“My son is amazing,” said Diana Hernandez, “he is a very happy little boy, despite everything.”
Emiliano was born with very limited vision, Kernicterus and severe sensorineural hearing loss. Despite his global developmental impairment, dystonia, hyotonia in his trunk and hypertonia in his arms and legs, his family has pressed forward and worked hard to provide for him and his six-year-old brother Jeronimo.
This is exactly the kind of story Variety – the Children’s Charity works to raise money for and has done successfully for more than five decades, most recently raising more than $5.7 million last year alone.
“It is extremely hard, we have to be a family on a single income because there just is not enough government support to allow my husband Cesar and I to both find employment,” said Diana.
Variety CEO Cally Wesson said helping families like the Hernandez’s is part-and-parcel of what the telethon is about.
“We all as parents with special needs children have our struggles at times, be it with mobility, wheelchairs, orthotics, or even mental health counselling,” Wesson said.
“It can be almost impossible to afford some of those expenses, especially when you’re on a fixed income and so being part of Variety is about trying to make life a little easier and hopefully helping these children thrive.”
The family’s struggles are not uncommon for those who have a child with special needs like Emiliano, but Diana said that they’re just doing the best they can and hoping that something within the health system changes.
“Right now we are able to receive four hours per week (in home care), so Cesar is a stay-at-home dad and is our son’s care giver currently,” Diana said.
The Hernandez family has had to make the difficult decision of staying home in the face of rising living costs in the Metro Vancouver region, but the family is always looking on the brighter side.
Emiliano was the recipient of standing frame and custom orthotics courtesy of Variety, the frame which costs more than $7,000 is much needed for the family and helps support his lower extremities.
For the Hernandez family, non-government charitable organizations such as Variety are imperative to the future and wellbeing of their bright young boy.
“He understands Spanish and he may be non-verbal, but he communicates with his expressions and body movement,” said Diana who commutes to North Vancouver for work helping international college students.
“These organizations help so much, they do so much,” she said, “but the government needs to step up and do more.”
Right now the Hernandez’s face the reality of a growing child who will one day become more difficult to keep mobile and not only do they say that the four hours per week of in home help are not enough, but there is limited assistance with procuring a handi-capable van to ease that stress.
“When he was younger it was so much easier, we could carry him anywhere he needed to go, but that is changing and I really fear that he may be confined more and more to the home and unable to do the things he loves without access to a wheelchair accessible van,” Diana said.
Diana added that her family is not alone in this struggle. Many parents of children with special needs are facing the same struggle for mobility and affording everyday living expenses on a single income, but having organizations like Variety supporting them is a massive relief.
Emiliano, his mom Diana, dad Cesar and brother Jeronimo might have an uphill battle, but they maintain their focus on the positives and trying to enjoy every day as it comes, Diana said.
“He’s always smiling,” she said, “he enjoys everything little kids enjoy, like playing with water, going for walks in his chair or walker. He loves being outdoors.”