Lilah was born on January 16, 2016 via emergency c-section, and mom, dad, and big brother Carter were so in love with our new precious bundle of joy. Lilah was the happiest little girl who loved to be held and sang too. She never moved her legs, and her arms began to get weaker day by day, rather then stronger. By three months of age, Lilah was choking on her food and turning blue. We rushed her to the hospital. We spent the next three weeks in our local hospital where they kept telling us she was perfectly fine and just had hypotonia. Lilah kept turning blue, so we pushed to be sent to London Children’s Hospital. Upon arrival in London, the doctors at LHSC figured out that she had a partially collapsed lung and rushed her to the pediatric critical care unit and put her on high flow. Twelve hours later, both her lungs fully collapsed, she was crash intubated, put on life support, and this is where our long 208-day stay in the PCCU at LHSC hospital began. On June 30, 2016, Lilah was diagnosed with Spinal Muscular Atrophy, Type 1 and we were told she would not make it to her first birthday. Our beautiful little baby was losing more every day. She was no longer able to move her arms and was unable to breathe on her own. The doctors tried multiple attempts to take the breathing tube out, but we almost lost her both times. Lilah had surgery for her tracheostomy on August 24, 2016. Lilah’s mom and dad, Nicole and Eric, got married in the chapel in the hospital on October 1, 2016 so that both of our children could be there with them, and that was when the magic started. Shortly after the wedding, on October 24, 2016, Lilah received her first dose of Spinraza. Since then, Lilah has had a total of 9 doses. She has now surpassed her life expectancy, with her third birthday quickly approaching. Lilah’s mom and dad got trained on all her needs and care requirements in order to be able to bring her home, tracheostomy, ventilator and all. On December 12, 2016, we were finally home just in time for Christmas and our family was whole once again. Since Spinraza has entered our lives, our little fighter can now breathe on her own for 1 hour and 30 minutes a day! She can move her legs and is starting to lift her feet off the bed. Lilah can pick up toys and loves to play catch with her brother Carter. During assisted sitting she is even starting to hold her head on her own for small periods of time! We are very thankful for Spinraza, and for all of you raising funds to go towards research to find medications like this that have saved our baby girl’s life. We look forward to the 2019 Rebecca Run, and are very honoured Lilah will be this year’s race honouree! Thank you all!
