Hi Everyone!! As most of you know I started up the “Little Leaders” series to shed some light on the little shining stars in our communities and so far it’s been amazing to see the positive response come in from everyone in support of these uplifting blogs and the number of emails that we’ve received sharing stories of Little Leaders in YOUR communities!!
Our goal is to keep sharing these incredible stories coming because I am SO proud of all the kids out there who are doing SO much good and I believe they deserve to be recognized!! I want them to know THAT WE ARE SEEING WHAT THEY ARE DOING and we LOVE THEM! Kudos to the moms, dads and support system these kids have in order to live with such compassion and empathy! The point of this monthly feature is to spotlight these special little leaders and help them with their efforts and hope to encourage other kids, youth, and families to follow suit!
So without further adieu, our “LITTLE LEADER” for the month of February is … OLIVIA PULLEN!!
We learned about sweet little Olivia through her mom, Nicole! Nicole sent us an email and wanted to share Olivia’s story with us in hopes to help bring awareness to organ donation across Canada and for Canadians to register in their province to become an organ donor. We think this topic is extremely important and we jumped on the chance to help share Olivia’s story with all of you!
So, we will let Nicole share Olivia’s story in her own words below.
At only 3 weeks old (2014), our daughter Olivia went into kidney failure due to cystic kidneys and needed to be placed on emergency dialysis in PICU at Mcmaster Hospital in Hamilton, On. Mom and dad were given the difficult news that Olivia would eventually be needing a kidney transplant. To have this transplant she would need to grow big enough in size about 10kg.
Olivia transitioned to peritoneal dialysis, a form of dialysis which could eventually be managed at home. This would mean being connected to a dialysis machine for 16 hrs. each night. This would be in place of having normal kidney function. To help clear toxins from her system, her life support. After Olivia’s first three months in hospital, she was discharged to go home where mom and dad would connect dialysis each night.
We learned more about Olivia’s condition, ‘Renal Hepatic Pancreatic Dysplasia’, a rare genetic condition where only 8 cases have been documented in the world. As time went on, Olivia’s liver would be affected and in August 2017 she would be listed on the transplant list for a dual kidney/liver transplant. For the past year, Olivia has been living at Sick Kids awaiting transplant.
Olivia’s condition is complex and unfortunately, she cannot receive organs from a living donor. She needs both liver and kidney transplanted at the same time, a deceased donor. Olivia’s blood group is B + which is only 3% of the population and her antibodies are extremely high at 98% due to the numerous blood transfusions she has received. Even though she is complex, we have so much hope that her match will be found. Olivia just turned 5 years old and is feisty as ever. Given a second chance at life will give her the opportunity to live free from machines.
The organ donation rates are dismally low in Canada. More awareness is needed. The decision to become an organ donor is tough, but registering to become an organ donor can help save the lives of the numerous people awaiting a life-saving transplant. Unfortunately, Canada does not have a national organ donor registry, but you can register in your province.
Thank you so much for sharing Olivia’s story with us, Nicole. She is a SHINING light and we are sending her all of the love and positive vibes. If you are reading this and would like to register as an organ donor, please see the links below!
Register for Organ Donation
If you would like to make a donation in support of Olivia, please feel free to make a donation in her name to either the Ronald Mcdonald House or the Sick Kids Foundation. On behalf of Team Jilly, we have made a donation of $250 to the Sick Kids Foundation for little Olivia.