Welcome to a new series on our blog dedicated to inspiring Edmonton and area families, where we focus on families that go above and beyond and do amazing things within our communities. When we hear of a family that encourages others, inspires us, we want to share their stories!
Our first family feature is with Shaun and Cristina Fehr and their two girls, Norah and Hayden.
As first time parents, when Hayden was born they were excited for their future as a family, dreaming about what life would look like for them, things they would do, what their baby would be like or the life she would lead. Dreams so many parents have for their own children but as the months went on they were aware of some changes in Hayden that were concerning for them. An appointment was scheduled to see the Paediatrician, where those concerns about Hayden’s development were confirmed. They went through a series of tests including a genetics test and told she had a 21 Q Micro Deletion. A unique condition, as she is the only one with the form where she is missing a very small part of her 21st chromosome.
When the couple found out about her diagnosis Hayden was 9 months old. Shaun said "In that moment, the future you envision changes, it’s obviously devastating to hear that your child has this diagnosis. They told us she was missing 3 genes in particular that they’re concerned about and with those three genes, it could present itself in a variety of ways. The news that she’ll likely develop seizures, that she’ll be developmentally delayed and she’ll have a blood condition that puts her at high risk to develop leukaemia, was devastating news to us."
Their dreams were wiped away by those words of epilipsy, siezures, leukemia.
With those words their future changed.
Along with all the other news that they were faced with, they were told that Hayden would be dependent on them for her whole life. They were overwhelmed!
"It’s one of those things, where you start to think, what can I do? How can I change that fear around and embrace the life we have when we are suddenly faced with so much uncertainty" Shaun struggled with this new future they were presented with and looked for answers, ideas to help change this outcome. As any parent, Shaun wanted to do everything he could do to help his daughter, not just with the physical aspects but help her with a long-term provision.
In March 2016, Hayden started having seizures, for over two months they were in the Stollery Hospital, where she was having anywhere from 40 to 100 seizures a day!
“As a parent, you see the struggle that your child is going thru, holding her down for needles when she’s already had 40 that day hits the deepest part of you” says Shaun. “But, then you see the resilience in her and in so many other kids in the Stollery. Everyone is trying to do their best to hold it together for their child.”
On April 16th, Hayden’s second birthday she would have over a 100 seizures, losing count, it was one of the worst days they had experienced. During that time frame, they met with their Neurologist, where they discussed starting a new experimental type of treatment called IVIG, an infusion of a blood product that is administered through a vein. The IVIG when administered would help with her seizures. Hayden’s first IVIG took place a week after she turned two and three weeks later, she was seizure free. It was a major victory for the family and a medical miracle for them! This new treatment gave them hope, to be seizure-free was beyond incredible!
At the time, life for the Fehr family was minute by minute until they were discharged, they didn’t know what their daily lives would look like. It was during this time in the hospital that sparked an idea, with a new hope, a business was born. One that would help support Hayden as she grows, where they could involve her and give her a bright future along with helping all the families and kids they had met in the hospital. That’s where Tuff Sprout came from representing the strength of these kids and the potential that often goes unseen. Shaun and Cristina believe and are witness to the fact, these kids show incredible strength and have as Shaun has said: "proved them out of every expectation". Tuff Sprout, is a lifestyle brand, focusing on the love for their little heroes, who have championed on through difficult circumstances. In January 2017, their first product was released, a beautiful soft muslin blanket that is a symbol of love, strength and empowerment these kids have shown, with a portion of the proceeds going toward places like the Stollery to help purchase equipment needed while raising awareness and advocating for kids and families that are going through difficult times.
Along with starting up a new company, releasing their Love & Hero blankets, Cristina has written a beautiful depicted children's book, I had a dream, that talks about her fears she had as a mom and the hope she's been given through her experiences. The book will be released in 2018.
While life is still very busy with medical and therapy appointments, raising two girls and now running a business they are hopeful for their families future. To continue to follow the Fehr's journey go to Tuff Sprout's website at www.tuffsprout.com