Karma for Cara Microgrants help fund exceptional service projects led by youth 18 and under working to better their communities. Read about our microgrant recipient, Kaila, who created “Kaila’s Komfort”. “Kaila’s Komfort” ships personalized care packages to newly diagnosed kids with Chronic Recurrent Multifocal Osteomyelitis (CRMO), a rare auto-inflammatory disease.
1. What inspired you to start “Kaila’s Komfort”?
What started out this past year as a Girl Scout Silver Award Project has turned into a passion for touching the lives of others who have been affected by a rare auto-inflammatory disease that I have. Kaila’s Komfort was created to provide comfort to children recently diagnosed with Chronic Recurrent Multifocal Osteomyelitis (CRMO). I was diagnosed with this disease at the age of 8. The diagnosis took over a year, and was filled with fear, pain, tests, surgeries and hospitalizations. Because of its rarity, people rarely meet others with the same disease. When I was first diagnosed, my family felt alone and afraid. We had nobody to turn to for guidance or to provide comfort. When thinking of project ideas for my Silver Award, I immediately decided that that I wanted to tackle this problem. I didn’t want other children to feel this isolation and fear. My goal was to send personalized care packages to children newly diagnosed with CRMO in hopes of bringing comfort, providing helpful items, and letting the child and their family know they are not alone. Since I have personally gone through this, I know firsthand what can bring comfort while traveling this lonely path. After my Silver Award was completed, I decided to continue on with this project because I could see the positive impact it was making on others’ lives. To date, we have sent out 104 care packages around the world.
2. Why is your work important to you?
Kaila’s Komfort fills a very large gap in supporting children newly diagnosed with CRMO. Since this is such a rare disease, there are no current organizations that support these families. When families receive this diagnosis, they don’t know where to turn for information, and it can be a very fearful, lonely journey. Children especially feel alone because their peers do not understand their disease – one minute they can be fine; the next they can be in so much pain that they can’t walk. We are not only providing comfort to the child that is diagnosed, but also providing a contact and resource for the families, and they are welcomed into a supportive community of others in the same situation. We have been able to connect families that live in the same city and/or state, which has provided even greater comfort and support. Recipients have sent me photos of their child with their care package, and the smile on their face is the reason I want to continue on this mission. One mother wrote that she hadn’t seen her child smile for months because he has the disease in his jaw and it is too painful for him to smile. The picture I received showed a child holding his care package, and he was smiling from ear to ear – pure happiness. I want to continue to bring smiles to these well-deserving children.
3. How did the money from the microgrant help with your project?
I am so appreciative of the generous microgrant awarded from Karma for Cara! I was able to make a large purchase of CRMO Awareness t-shirts to be included in future care packages. Prior to this grant, I was purchasing them in smaller amounts, which made the cost higher per shirt. This grant allowed me to make a large purchase, which brought down the per shirt cost and will allow me to include shirts in many more packages to come. Recipients love receiving these shirts because they “make them feel part of a larger group” and really represent support and comfort. My project is ongoing, and I will be able to include shirts in many more packages to come.
4. What message of giving back do you have for others?
Anyone and everyone came make a difference and a positive impact in this world. For me personally, the rewards of giving back have been a true gift to me. I have met (through email) many extraordinary children, teens and their families that are following the same journey as me and my family. The notes and pictures of the smiling faces that I receive afterwards are what motivates me to do more. I can tell I am making a small difference in the lives of these families, and that is extremely rewarding! We should all try to be the rainbow in someone’s cloud!