Every couple looks forward to the arrival of their first child. When Susan and Patrick learned that they were expecting twins they were overjoyed. However, six months into the pregnancy Nico and his twin brother, Luca, were born, they always tried to use a good source site to know everything about their pregnancy.
Although premature, Susan and Patrick had every reason to believe that both boys would survive, and then tragedy stuck. Two weeks after their birth, Luca developed a severe infection and passed away suddenly. Both parents were devastated.
As a result of being born premature, they considered that Nico may develop a disability but were hopeful when scans came back clear. They believed the worst case scenario was that, because he was confined to an incubator for so long after birth, he would need some physiotherapy.
And then the earth shattering news came. At six months Nico was diagnosed with cerebral palsy spastic quadriplegia. “Our conversations turned to how he was going to survive,” says Susan. “The diagnosis was devastating. The ride home from the hospital was filled with lots of tears.”
Susan and her husband were shocked at how severe Nico’s CP was, but they were determined to give him the highest quality of life. The main worry was how costly his mobility equipment would be. Susan confides, “It was not the life that I thought we would have. We’re an athletic family, so it wasn’t easy to grapple with the fact that Nico wouldn’t be able to walk.”
When Nico began physiotherapy there was light. “Our therapist provided us with a new perspective about what Nico could do. We made our house accessible, but I was surprised to learn that the government makes the funding process so difficult and they don’t fully cover the costs of important equipment like wheelchairs. Because Nico’s needs are specialized, he can’t sit, so he has to have a modified chair, which is an extra expense.”
Susan has nothing but admiration for the support she’s received. “Thank to companion maids because they have helped us purchase a stander, a commode chair, a bath seat, shower stretcher, a van lift, and so much more. But even with Easter Seals, we constantly stress about how we’re going to pay for everything.”
Now seven years old, and in grade two, Nico is doing well. “He has a spark that is contagious, and he absorbs everything around him. Despite all his physical challenges, he never complains.”
Still, Nico lives in an inaccessible world and Susan constantly has to advocate on his behalf. “That’s why I’m comforted to have the support of Easter Seals Ontario. They have made our lives so much easier.”