A New Chapter – Tillium Kids, Inc. (www.trilliumkids.org)
Hello friends, I am very excited to share that I was asked to be on the board of Trillium Kids, Inc., a non-profit that provides support for families with medically fragile children. My official title is Creative Marketing Designer. I will be responsible for marketing on social media and fundraising. I would like to thank my Concurrent Care physician, Dr. David Sine, M.D., for this opportunity.
This is what I think is my purpose, I am supposed to help raise awareness for us “-1%ers.” I say us “-1%ers” because we are the rarest of rare patients, we aren’t just affected by 1 severe or rare disease, we are affect by multiple. I have been fighting rare diseases since birth and the fight continues today. I am extremely lucky to have my parents who were always by my side while sick. I was never left alone. I remember waking up after my 4th open-heart surgery and although my parents weren’t there, my grandparents were right next to me looking over me.
I grew up in a household with both parents working. When I got sick, I realized that I might not be able to work because my health makes me inconsistently available. Most children and teenagers don’t think much about the future. Due to my diseases, it was always first and foremost; it required me to grow up in many ways faster. Each decision required thoughts on medications, nearest medical care, elevation, risk factors and timing.
I knew wanted to work as it gives one purposes; the frustrating part was my inability to do so on a regular basis. Also, having rare diseases is expensive. I knew I couldn’t be permanently dependent on my parents. However, after getting sick 3 years ago, It became clear that I will not have a job with normal hours. I decided to stop school (well my health forced me too) but I was incredibly disappointed. Another dream lost.
After Jake and I met, I freaked out because I wanted to marry him but I knew I wanted to give something to the relationship. I needed to feel like I was doing something for myself. I started to blog and speech to tell my story. Now I have expanded this to Trillium Kids, Inc. and the Compassionate Care Coalition. I will soon begin lecturing medical professionals on the proper behavioral management of the chronically ill. I think I have found my purpose. Thank you Dr. Sine, Jake and my family for believing in me.
Please following on Facebook (Trillium Kids, Inc.) and Instagram (Trillium Kids)