A Brother is a Gift to the Heart, and a Friend to the Spirit
My name is Hilary Volz, and I am here to share the Sibling Story of Brycen and Kallen Volz.
Brycen is 7 years old and was born in December 2017; Kallen is 6 and was born in December of 2018. They are one year and six days apart. Their closeness and bond was unmatched from the very beginning. Brycen was diagnosed with SYNGAP1-related disorders in June of 2021.
Before Brycen’s diagnosis, our family dynamic was already unlike other families around us. Brycen experienced issues with behaviors and eating, which led us to see several specialists. With everything going on around him, Kallen spent considerable time with many close family members as we tried to figure out the root of his brother’s medical complexities. Our village was a huge key to the earlier years of Kallen’s childhood, as we had to change or cancel many family activities due to Brycen’s needs.
Kallen struggles each day with the challenges of living with a brother with SRD. Facing and overcoming these has made Kallen the most strong, compassionate, loving, and kind soul I have ever known. The love Brycen and Kallen have for each other is nothing like I have ever seen before between siblings, and I am amazed by their connection each and every day. Kallen is very helpful with Brycen and his day-to-day tasks. He loves to give him a hand when he walks, helps him to the bus, provides him with his sensory toys, and tries to problem solve behaviors when they are happening. He is always there to give him a helping hand, and in Kallen’s own words, “I will always be there to hold his hand.” In his actions toward Kallen, we can see the love Brycen has for him, and that he appreciates his brother’s love and friendship.
As their mom, watching their relationship develop over the last 6 years has been nothing short of a miracle. When we have kids, we have a vision for their future, their bond, their friendship, and the journey they will take through their life together. After receiving Brycen’s diagnosis, we experienced a lot of grieving and anger of the life we had envisioned for our sons, but their sibling relationship has brought so much joy to our life as a family.
Witnessing their connection, my husband and I have less fear for the future. For other SYNGAP1 parents my advice for you is to take it one day at a time and have faith in the journey you are on. This is not the life you envisioned for yourself or your children, but children are resilient, and through their eyes, experience, and love for one another, you are so blessed with the life you have with them.
Read Brycen’s Warrior Story here.
Hilary’s SRF Volunteer Bio is here.
Listen to Hilary on SYNGAP1 Stories Podcast here.
