Hi Everyone!! As most of you know I started up the “Little Leaders” series last year 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 for 2018 (along with many others!) 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 June is … Everleigh Garraway!!
Today we wanted to share Everleigh’s story with you as it represents the truest form of love, courage, and the power and strength of FAMILY!! I’ll let Everleigh’s wonderful mama tell the story below!!
On Mother’s Day of 2016, we ended up taking my two-year-old son, Madden, into the emergency at the Alberta Children’s Hospital in Calgary Alberta for what we thought was a bad bug/flu. After staying in the hospital with my son for six months we finally got a diagnosis for a condition we have been trying to diagnose since he was six months old.
We were told he had a very rare genetic disorder called IPEX and it meant that he would be needing a bone marrow transplant (heart drops). After being tested and finding out his sister was a marrow match we knew who his donor would be and knew we wouldn’t have to wait an endless amount of time trying to find a donor.
After what had already been six months of the four of us not getting to be together at the same time and Everleigh not getting to see mom and dad at the same time, she was more than ready and willing to do anything for her two-year-old brother.
She went through a bone marrow harvest surgery without shedding a tear and was braver than both her mom and dad put together. She made sure to tell Madden before going into surgery that she was “just going to get a poke to get him her blood so he could feel better”.
Having both of our children in side by side rooms at the hospital with one on his final day of chemo and one just out of a three-hour surgery was the worst thing we have been through. But without her, I don’t know where we would be.
They couldn’t be in contact right after so they could only talk through a glass door and as soon as Everleigh woke up from surgery Madden walked to her door and said: “Evy you were so brave just for me”. Her resilience and strength are not that of a normal four-year-old and she has no idea. Madden may be going to another transplant in September now and still, she has no worries about going through the process for him again knowing it could help.
We are so grateful you took the time to share the story of your, not one, but two, incredibly strong, and beautiful children with us. On behalf of Team Jilly, we have made a donation of $250 to the Alberta Children’s Hospital Foundation in support of Everleigh and Madden’s courage and love for each other.
XOXO
Jilly
What a beautiful inspiring story. My 6 year old granddaughter was diagnosed at 6 months with a rare liver disease called Glycogen Storage Disease which means sugar gets in the liver and can’t get out. She is not allowed to eat anything that may contain sugar. There is no cure and to stay alive she has to be fed cornstarch every 3-4 hours and if a dose is missed her sugars will fall which means seizures and possible death. When I see my granddaughter pricking her finger to check her blood sugar and seeing her fed cornstarch with a g tube its heart wrenching. But life does goes on and her family tries to live a normal life as possible. I give praise to her big sister who loves to make slim and what she sells goes to a cure for this disease. Until my granddaughter was diagnosed I never really gave much thought to rare diseases. I have since learned there are just so many that don’t get the attention for a cure. My heart goes out to all families with dealing with any kind of childhood disease. They are special, amazing and strong people. We do have some hope on the horizon, just the other day a recipient was the first to receive gene therapy which means a copy of the gene is delivered to the liver. Its not a cure but if it works it will mean no more cornstarch and they get to taste fruit for the first time.
My heart! So much love and good health to these lovelies.
I just read your story, definitely had to wipe away tears thinking of everything you have gone through and continue to face. Thank you for sharing it with us! You were brave to do so. Everleigh and Madden are precious. Please give your dear sweet kids a big hug and kiss.