Heath was beautiful when born, but Kayla’s instincts told her something wasn’t quite right. He rapidly declined from a few weeks old, but wasn’t diagnosed until 18 months. Heath has a rare chromosome disorder known as 1q21.1 microdeletion syndrome, which is a rare condition that involves part chromosome deletion in each cell.
After thinking Heath had cystic fibrosis, and going through months of uncertainty, Kayla was an absolute mess when she received the real diagnosis. She had no idea what it meant for Heath and her family, and there was absolutely no clarity going forward. Kayla’s advice for others in this position is about positivity and momentum: “Stay on it, with the doctors, with your family, and with your child.”
According to Kayla, it’s all about perception. Even when times are incredibly tough, “we get the opportunity to make the complete narrative. By changing our perception, we can have a huge impact on Heath’s attitude and overall experience.”
Like all kids with a complex medical diagnosis, support is central to the everyday management of Heath’s condition. Even on the bad days, little things can still have a positive impact. Meeting other parents in a similar position is important to gain perspective and strength during this process. While it’s easy to get stuck in negativity, Kayla approaches the bad times as a drop in the ocean.
Heath received his Supertee around three years ago, at a time when everyone was frightened and unsure about how to move forward. It simplified the process involved with clipping and unclipping leads, and made him feel much more comfortable and in control during his hospital stays. During challenging times when parents are close to losing it, this simple help can be an incredible relief.
You lose so much being in hospital, but the Supertee gives something positive back. Instead of focusing on what was lost, Supertee made Heath feel proud to be a real-life superhero.
