2020 Team 16 - Team Leo

On October 29th 2014 at 11:07 a handsome little boy weighing 5lbs 5oz was born. Jennifer, Paul, and Lilly-Rose were so happy to welcome baby Leo to their family. He was adorable tiny and fragile. We were incredibly happy and excited. Soon after he was born he was transferred to the NICU at Sickkids. He was diagnosed with Down syndrome and need surgery. After 22 days in the hospital he was released and our life as family in our home started. It was incredible he was a happy sweet boy. He was achieving is milestones and he worked very hard to do so. We were blessed and things were going very well. 

In April of 2016 we decided to take a family vacation to Jamaica. It was so much fun. Leo was a little off from the travel but he enjoyed eating sand and swimming in the ocean. When we came home after our travel Leo went in for a routine surgery typical to children with Down Syndrome. Unfortunately the surgery didn’t go as planned. He was a little off and need to be transferred back to Sickkids and had another emergency surgery. This time things were different. He was diagnosed with pulmonary hypertension. Our home life became increasingly difficult and we needed help. Leo was regressing from all the milestones he had achieved.  Nonetheless he was still the same sweet loving boy. One minute he’d give you a big smack on the cheek and afterwards smother you with big wet kisses. 

We had routine checkups one day we went to Sickkids for our checkup with the cardiologist and they noticed him struggling more then usual. At that moment we started to run more testing. Paul and I were brought aside with a team of doctors and the PAC team from Sickkids. At that time everything they said was a total blur. It was too much information but what we did understand was that he was terminally ill. 

We were introduced to Emily’s house at that time. It was a breath of fresh air. To know we had additional support if we needed it.  After Lilly-Roses 5th birthday Leo took a turn for the worst.   He had lost the ability to crawl and could barely sit up but he would constantly have is arms up looking to be picked up. He was so affectionate, he was the boy that made you feel like you were the only person in the world for him. His face would just melt your heart. Unfortunately he became increasingly   uncomfortable and started to have mini strokes. His heart and lungs were failing.  

At that moment we knew it was time and we were admitted to Emily’s house. It was a blessing our family started to connect again. We felt like we had a “normal” family life again.  This was such an important time for us. All the staff at Emily’s house was so warm, caring, inviting and attentive to Leo’s and our needs. They were so great we Baptized Leo and even got to take him on an adventure to the aquarium before he passed. We are so thankful for everything Emily’s house has done for us. On March 16th, 2017 we said goodbye to Leo. We will never forget our home that we held our sweet baby Leo for the last time. 

 
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