Gavin, an adorable 2-year-old, lives with his parents Karen and Adam, and his sister Madison, in PA.
When Gavin is home he loves to do everything any two year old little boy does. He enjoys going to the park, the library and even on shopping trips with mommy and his sister Madison. He likes to watch movies and loves to snuggle with his little ducky. Gavin spends more time in the hospital than out as he battles continual blood infections, blood pressure instability, consistent fevers, and other life-threatening symptoms, due to complications of a presumed Mitochondrial Disorder and Macrophage Activation Syndrome (MAS). Gavin is completely dependent on IV nutrition and multiple medications to sustain his life. He is also dependent on blood products and receives transfusions about every 2 to 3 weeks. Gavin has temperature instability causing him to be hypothermic when sleeping and requiring him to sleep under an infant warmer. He requires intensive caregiving both in and out of the hospital, but in spite of this he remains a silly, fun-loving little boy!
"One thing that we have learned on this journey is people in our life will never fully understand what it is like to daily fight for our child's life and only those who have walked in our shoes can understand. This often times makes us feel isolated. When I am able to communicate with other mothers who are either walking this path now or have in the past, it feels so good. It is nice to be able to talk medical lingo, which is part of my normal life and have another mother understand. Connor’s House's ability to meet parent's need for connection within the special needs community will be priceless.
Siblings of special needs families often get pushed aside. Adam and I often have no clue how to explain things like why Gavin has tubes and equipment and other children do not. We are hoping that through the support of Connor’s House our daughter will be able to meet other kids with special needs siblings allowing her to see that other children live just like she does -- that life can go on even if it's in a hospital room beside their bother or sister bed.
I think parent to parent support is amazing -- I'm a huge fan. Often times I've seen the hospitals send parents home with a child who has been thrust into the world of feeding tubes and monitors with absolutely no support! It's so sad. So many families are out there doing this alone -- it really breaks my heart." Karen, Gavin's Mom