“He’s always happy and he’s always smiling … He’s absolutely a little sweetheart.”
Suzanne’s face lights up as she describes her son, Jules, who will be just old enough to begin junior kindergarten in the fall. Although this is a standard milestone for a kid his age, there’s something special about this playful preschooler.
Jules was born with SEPT 11, a genetic condition so rare that only one other person in the world shares his diagnosis. As a result of his condition, Jules lives with visual impairment, hearing loss and very low muscle tone. But it’s not Jules’s disabilities that make him stand out.
“He lights up a room,” Suzanne says, beaming: “He’s got a lot of determination and strength. And he just always makes the best out of every situation. He’s a really resilient little boy.”
Jules has bright blonde curls and an infectious smile that never seems to leave his face. “He just gives off this positive energy,” Kylee, a therapist who has worked with Jules over the past two years, explains, “I just love working with him. He’s the light of my life on a Friday afternoon.”
Prior to the pandemic, Jules visited Kylee weekly for speech, physical and occupational therapy. Through hard work, Jules gained the ability to sit up on his own and he has improved his balance and visual tracking. Despite these accomplishments, however, Jules still requires a several pieces of costly accessibility and mobility equipment to get him safely through his day.
“Having a child with special needs can be very expensive” explains Suzanne. “Equipment can be very expensive and just not knowing how you’re going to get it for your child can be very overwhelming.”
Even to simply take a bath, Jules requires equipment to keep him safe. Thankfully, Easter Seals was able to help Jules’s family purchase a bath chair, which can cost up to $5,000. “It’s got little straps to hold him at the waist, head support, leg supports and straps,” Suzanne says, describing the chair. This piece of equipment is not just essential for maintaining proper hygiene, but it allows Jules, who “loves to be in the water,” to enjoy a few moments of fun in the tub, like any other kid his age.
With regular services and care providers unavailable due to COVID-19, children with physical disabilities are relying on this type of at-home equipment to get by. If their equipment breaks or they don’t have access to it, a child like Jules loses the ability to complete essential daily tasks, like taking a bath.
Ensuring that children and youth with physical disabilities can live safely and with dignity in their own homes is our priority. It is a vision only made possible through the generosity of our donors. “It’s nice to know that there’s something like Easter Seals to help out families who can use the support,” Suzanne shares. Thank you to all Easter Seals donors; your unwavering support allows a child like Jules to keep shining, even through these challenging times.
Please help kids like Jules. Donate today.