Care Packages For CRMO Kids

My name is Kaila, and I am a 15-year old who has multiple auto-inflammatory/auto-immune diseases. My main diagnosis is Chronic Recurrent Multifocal Osteomyelitis (CRMO), a paintul auto-inflammatory bone disease. This diagnosis is rare - 1 in a million - it typically is diagnosed in childhood, and by the time we are diagnosed, we have gone through a lot of pain, a lot of testing, and a lot of poking and prodding. Many of us also have additional secondary diseases - Arthritis, Psoriasis, Crohn's, as well as others, and we endure a lot of pain.

I completed my Girl Scout Silver Award in September of 2015, which consisted of creating care packages for children around the world that were recently diagnosed with CRMO. After the Award Project was completed, I decided that I wanted to continue with this passion. I hope to continue to be able to make a difference in these children's lives by providing comfort with items that will help relieve pain, provide distractions during medical treatments, help make treatment easier and less painful, and also let them know they are not alone. Since I have personally gone through this, I know firsthand what can bring comfort while traveling this journey.

Each care package is created especially for that child based on their likes/interests, types of treatments they are receiving, etc. Items that may go in care packages include: CRMO t-shirts; iTunes gift cards, books, magazines, coloring books and crayons, notecards and cool pens; fun band-aides; homemade rice heating pads (made in a theme that they are interested in, i.e., princesses, dogs, superheroes, etc.); a stuffed animal or card game, and for those that receive infusions, injections or blood draws and have a hard time with these, a product called Buzzy. I was given a Buzzy when I started having bi-monthly injections, and it really helped with the pain. I learned to calm down and deal with getting the shots because I no longer needed to worry about the pain involved in these with the Buzzy.

To date, I have sent out 159 care packages. I would like to continue sending care packages, and donations will play a big role in allowing me to continue this mission. I would also like to have a portion of future care packages be either donated or sent out directly (all managed through me) by recipients of care packages: a pay it forward idea. It feels good to be given a gift; and it feels even better to at some point be able to provide that same feeling to someone else in your shoes.

I am relying on donations and fundraisers to purchase items to put in these care packages. Please consider making a donation to this worthy cause. I know it will bring joy and relief to many children that deserve a break!

Thank you!