When becoming a parent for the first time, nobody prepares you for the worries that start the second your baby is born. With every little twitch, hiccup or cough, you wonder, is that normal? In most cases, the answer would be yes, but for Senna, the answer was a big devastating “no.”
Senna was two months old when she had her first seizure. Little did we know that her seizures would continue, usually about 15 each day. On Senna’s worst day, she had 39. We remember thinking, “she just needs a chance – how can life begin this way for our precious little girl?”
Our world was shattered when we received Senna’s diagnosis of Tuberous Sclerosis, a rare disease affecting many vital organs and causing developmental delays. There are some things that are just so overwhelming that you can’t wrap your head around them. So when the doctors suggested brain surgery just before her first birthday, we actually felt relieved. Everyone kept saying it must be so scary, but for us, it meant hope!
The surgery couldn’t have gone better, and Senna hasn’t had a seizure since. The next crucial step was to reduce Senna’s medication and focus on her development and learning. This is what brought us to the MAB-Mackay, which helped Senna to blossom in so many ways.
When we first began therapy at the MAB-Mackay, Senna was 1½ years old, but in truth she was still very much like a baby – she hadn’t cooed, giggled or even crawled yet. We didn’t even know if she could. It was a lot of work, but they helped her achieve many of the milestones she had missed.
Because Senna was incapable of even making eye contact, her visual attention was one of the first areas her therapists focused on. When we stopped her medication, it seemed like she had just woken up. Together with her occupational therapist, we worked on improving these skills. You can’t imagine the incredible feeling of joy we had when Senna finally looked in our eyes and connected with us.
Senna had never laughed or smiled, which made it so hard for us to know what she wanted.
The physiotherapist helped in so many ways too, from recommending orthotics for Senna’s ankle muscles to showing us simple tricks such as leaving a mess around the house so Senna could learn to maneuver around objects when learning to walk.
There are so many things that make the MAB-Mackay vital to a child like Senna. Their toy library is but one example. We were able to keep Senna stimulated with a new toy each week, and each one had a purpose. One of her first toys was a shopping cart filled with weights that enabled her to get up on her own and encourage her to take steps. We used puzzles for hand-eye coordination and fine motor skills, and a bowling ball and pins to help her learn to throw. A simple thing like how to release her grasp took a long time for her to learn, but now she can do it!
Our speech therapist worked tirelessly with us on Senna’s communication skills. We began with basic hand-over-hand sign language so she could express herself. It was amazing once she caught on! Feeding Senna and understanding when she wanted more or was finished made a world of difference.
We have to say that as parents, the wonderful staff of the MAB-Mackay were there for us every step of the way. They showed us that we needed to be less helpful to Senna, so she would try to do things herself. They taught us that if we were always anticipating her needs, she would never need to communicate. If we always carried her, she wouldn’t build up muscle strength. It was heartbreaking to watch Senna struggle, but they taught us that she was not struggling – but actually learning.
Senna is almost four years old now, and she’s come so far. The doctors who said Senna may never talk or walk would be surprised to know that she’s learned to speak and even dances. In fact, her speech therapist says she understands more than she can communicate with her 40-50 word vocabulary. There are no words to describe the triumph we felt when she finally said “Papa” and “Mama,” and pointed us out in pictures.
We are deeply grateful to the MAB-Mackay for helping us to be better teachers and parents to our little champion. Your generous support of this special institution has given Senna a greater chance at independence and a real future. What more can a parent want for their child!
Juliana and Vince,
Proud mom and dad of Senna