Join "Team Blueberry", (Alina's nickname), at Lace Up for Kids on November 16, 2018 at UBC Doug Mitchell Thunderbird Arena and make a difference in the lives of children in BC living with Rare Disease!
In 2016 we were blessed to meet our second daughter, Alina, who surprised us at 10 weeks premature and spend her first 90 days of life in the NICU at BC Children's Hospital. It was not the reunion that we had anticipated, nore a journey we felt prepared for at the time.
Alina has 2 diagnosis; a rare association called VACTERL, and congenital Asplenia. She was also born with a cleft lip and partial palette. VACTERL is an acronym that refers to a non-random association of birth defects that affects bone structure, organs and the digestive system all along the mid-line of the body. On her second day of life, at 1.3 kilos, she underwent a major 5 hour surgery, and has had 3 operations since. We know that she will have at least 1 more operation before she is 10 years old. Because she was born without her spleen, Alina will also be on antibiotics for at least the first 5 years of her life to help protect her from major infections that her body does not have the immunity to fight.
Alina's complicated medical journey has changed our lives, as well as our perspective and gratitude for health. She has also kept our family busy with many different medical specialists at children's hospital. Connecting with the Rare Disease Foundation just after going home from the NICU with Alina has provided us with a community that speaks our language and helps us navigate decisions that we never imagined we would have to make as parents. Between the Rare Disease Foundation and the BC Children's Hospital, we feel like we are at home within the health care system.
Proceeds from the event will go to BC Children's Hospital Foundation in support of Rare Disease Research. We know first hand that research holds the key to finding better treatments and possibly a cure for many children in BC. I am lacing up to make a difference.
Please support us and donate to help the the 84,000 children and their families with Rare Disease who rely on BC Children’s Hospital each year.