I ride in honor of my son Toby Brown and in Memory of Jillian Janik.
Both Toby and Jillian were born with a critical Congenital Heart Defect called Hypoplastic Left Heart Syndrome- HLHS. Simply explained it means Toby and Jillian were born with half a heart.
Toby- Has had a unique and complicated journey to say the least. Spending 336 days out of his first year of life inpatient at Children’s hospital Colorado. Today Toby is one of the happiest 7 year olds you will ever meet. He has undergone 3 open heart surgeries, 16 cardiac caths, 2 general surgeries, 4 strokes, along with more test and procedures most adults will ever have in their entire life. He dearly loves his family, friends and animals. He has taught us more about life in his short 7years then I ever imagined. There have been more times then I can count that we have been terrified that Toby would not survive, for some families this nightmare becomes their reality. Without Children’s hospital Toby would not be here today. By raising funds the heart institute is able to provide the best care and equipment in nation. Because of this Children’s is one of the top facilities for CHD patients. My hope is one day we will find a way to save every child so parents like Nikki and JR don't have to live the nightmare of losing a child.
Jillian story, by her amazing mama Nikki-
Jillian (Jilli) was born in December of 2010 with Hypoplastic Left Heart Syndrome. She had her first surgery at 6 days old and after flying through recovery was able to come home to her big brothers Oliver and Athan at just 21 days old!
Over the course of her first 2-1/2 years of life, Jilli would have many procedures and surgeries, just like all HLHSers do. Every single time she showed so much bravery and overcame every obstacle thrown her way.
In 2015 Jilli started preschool and in September became Big Sister to little sister Madilyn. She was the BEST, most attentive and loving big sister, while still giving her big brothers a run for their money!
At the end of January 2016 Jilli suddenly became very, very sick. She was rushed to Children's Hospital and within 20 minutes of arriving at the ED the team at Children's was calling for emergent life support for her.
We eventually found out that Jillian was in severe septic shock, caused by meningitis.
On February 4th, 2016 after nine days of waiting, hoping, and praying at her bedside, Jilli suffered a catastrophic brain hemorrhage, and we had to make the heart wrenching decision to let her go.
On February 14th, 2016- Valentine’s Day and Congenital Heart Defect Awareness Day, we celebrated Jillian's life with a beautiful service and the most amazing tea party.
We will never get over the loss of our sweet girl, but remember her in all we do, hear her whispers in the wind, see her in the sunrises and sunsets, and feel her love with us, always.
We are eternally grateful to everyone who continues to love and remember Jillian.