Despite Katie Smolich battling several complex rare diseases, she's made it a point to give back to kids also having their own health challenges. The Beanie Love Foundation she started as a teenager aims to "spread hope, joy, and love to children and their families fighting life-altering diseases, disabilities, and injuries." Katie says her faith and family have gotten her though medical situations many doctors thought she would not live through.
Katie received her first TiLite more than 7 years ago after a treatment went awry and left her partially paralyzed on her left side. Compared to the standard folding wheelchair Katie had before, the TiLite titanium rigid chair allowed her more freedom and comfort in her life. She now uses the TiLite TRA.
Trying everything as a child
I was born, raised, and adopted at 10 days old in Arizona. I love Arizona and probably will never leave or at least will live here most of the year if I were to move. It is absolutely stunning here, and I love the weather and all the activities it has to offer. Also, it’s a benefit that we don’t have tornadoes, hurricanes, or earthquakes.
I have an older brother named Matt who is four years older than me. He is incredibly smart and creative. He is also an entrepreneur like me and runs his own dog training business called Pawsitive Experts. My family is absolutely incredible and has fought so hard for me and never given up on finding answers to my medical issues.
Growing up, our parents let us try anything we were interested in. I was very active and played basketball, softball, tennis, and lacrosse. I also did swimming when I was very little. I participated in gymnastics, acrocheer, indoor rock climbing, baking, cooking classes, art classes, piano, singing, and guitar. Because of this, I think it helped me grow a lot and learn that you can do anything and try anything, and whether you fail or succeed doesn’t matter just as long as you try and give it your best.
I loved to draw a lot and was very quiet when I was little due to bullying. So drawing was an outlet for me in a lot of ways. I also loved sports and especially enjoyed playing basketball and lacrosse, as well as indoor rock climbing the most.
Because I was adopted and we were not given any health history from my birth family, I wasn’t diagnosed with Ehlers-Danlos syndrome (EDS) until I was 13, although my orthopedic surgeon and mom had suspected it after my first dislocation when I was 10 years old. I think this was somewhat a blessing in disguise because even though I grew up half blind, I was able to participate in so many activities and sports that otherwise, had we known, I may not have gotten the same amount of freedom in doing those things.
Fighting through a complex health history
I am medically very complex with multiple rare diseases. I was born blind in my left eye by a congenital cataract. I also was diagnosed with an immune deficiency called common variable immune deficiency and hypogammaglobulinemia, and due to the medicine I received, I had severe anaphylactic shock that left me partially paralyzed on my left side.
Due to my immune deficiency, I was always at high risk for developing cancer, especially blood cancers, and we believe it could have caused my Castleman disease. It took over three years to diagnose and seven awake procedures/biopsies, four major lymph node removals, a bone marrow biopsy, and hundreds of tests and blood draws. We received the final diagnosis of idiopathic multicentric Castleman disease the week of my birthday in May of this year.
The Lord has been faithful to carry me through it all and has given me the strength to continue to fight. Many of my doctors and doctors that have read my case say that they don’t know how I have survived or how I’m alive except for my continued positive attitude and fighting spirit. I know it’s by the grace of God because He has more in store. He has and will continue to carry me through as I continue to fight all of this, and now also liver disease possibly caused by Castleman disease or another rare disease.
God has used every single part of what I’ve gone through and faced to allow me to help others as I relate and understand what they are going through. I can give them hope that nothing is ever truly impossible with God, and there is always hope, no matter how dark it may get. I want my story to point people to Christ and help inspire and give them hope to never give up.
My TiLite Due to my left-sided partial paralysis that causes weakness and my knee to buckle under me, I use a Tilite TRA dual tube adjustable titanium wheelchair. My first wheelchair was also a Tilite rigid frame titanium wheelchair, and I truly love their wheelchairs the most.
When I first got my Tilite, I was shocked at how much more freedom I had, how comfortable it was, and how much it helped with my back pain. Before I received it, I was in a hospital standard folding wheelchair that did not support me at all and caused many obstructions in my daily life. I just recently received my new Tilite, and I picked white and blue as blue is my favorite color. I absolutely love my new wheelchair and didn’t know it could get even better! It’s lightweight, turns on a dime, looks sleek and elegant, and is incredibly comfortable and durable. My original Tilite has been through the wringer with multiple flights, transfers in and out of vehicles, multiple terrains and events, and it has held up incredibly well after 7 years of use.
I was also blessed by the incredible team at Permobil with brand new wheels and hand rims, brakes, and push handles for my old chair at the Pheonix Abilities Expo. It helped me continue to use it to its full abilities while I waited for my new chair. I can’t even put into words what that meant to me as their team gave me back my freedom and independence. The care, support and love I received from their team was next to none and truly impacted me in ways they will never know. I also met an awesome new friend, Hawken.
Starting the beanie love foundation
During high school, I started a nonprofit shortly after being diagnosed with EDS called the Beanie Love Foundation. The Lord had given me a heart and vision to help other children who were going through similar things to me. The Beanie Love Foundation was born to help bring hope to children and young adults fighting life-altering diseases, disabilities, and injuries.
It started off simple and small after I had been following a little 5-year-old girl named Kate’s battle against brain cancer who also went to Phoenix Children’s Hospital like me. Every day, I would pray for her, and I wrote a letter of encouragement to her and her mom. Shortly after doing a few more letters of encouragement to other children and teens that I would hear about, the first Hope Pack was born.
The first Hope Pack I ever made went to a preteen boy named Nick who was fighting osteosarcoma bone cancer at Phoenix Children’s. I remember praying and picking every item out including a toy for his little chihuahua and the name sake of our charity, a hand-crocheted beanie that I made that had a full mohawk. I remember reading the update from his mom of how much it blessed them and how the letter meant so much as well as every item I chose. When I scrolled down and saw the picture of Nick wearing my beanie and all the items around him, I screamed and began to cry. I knew then I wanted to do this the rest of my life.
We now have sent hundreds if not a thousand or more Hope Packs and gifts to children and young adults across America and even one in Australia. Our Hope Packs now consists of a drawstring bag or backpack with the child's name on it that I customize, a Jesus Calling or Jesus Calling storybook Bible, Lots of Jokes for Kids book, toys, comfort items, and other items that help make their treatments and the hospital less scary. I also include a personal letter of encouragement written by me, and access to our Spotify playlist that’s filled with worship music and uplifting songs.
We also now have multiple programs, including our Christmas programs where children spending Christmas in the hospital or a medical facility receive our Hope-Filled Christmas packages stuffed to the top with Christmas gifts. We also support families that have had a rough year medically by providing our Christmas Hope Houses. These are cardboard boxes decorated like Christmas houses and filled with gifts, including the Christmas Cheer package, which provides everything needed for a Christmas baking night and activities, and a book about the meaning of Christmas to help families make life-long memories.
I am most passionate about the Lord, my charity, and loving and serving people. I love getting to spend time with the Lord. I also love getting to help others and show them how loved and important they are and making sure they feel seen. When you have a disability or life-altering disease, there are many times you feel isolated or overlooked. Because of my own experience, I love to make sure I make others feel loved and special even if just for a moment. My charity has helped me do this in so many ways, and I love getting to see what God does. He constantly gives me new ideas and ways that we can support families. I also love getting to write, and hopefully I will have my book published soon about the incredible ways God has moved in my life and shown me His vast love and power through all the trials I have been through.
Rapid fire questions:
Favorite restaurant or place to order takeout food from?
That’s a hard one as I’m I big foodie. But probably the Greenhouse, PF Chang's, and Tommy Bahama Restaurant.
What is your favorite season and why?
Gosh, another hard one. I really enjoy spring because of the weather and the beautiful flowers in nature, I also really enjoy winter because of Christmas and Thanksgiving. But especially Christmas, as it’s my favorite time of the year.
If you could have dinner with one person, dead or alive, who would it be?
It would probably be Bob Goff because he inspired me to finally write my book, and he is such a fun person who loves people so well. I always want to love people like Bob Goff does with complete lenses of Christ and how He sees His beautiful people. I also know he would have the best stories to tell at dinner.
What is your favorite movie of all time?
That’s hard! I love movies and have too many favorites. A few of my top favorites would probably be Peter Pan from the early 2000s as it brings back so many childhood memories with my brother and me, Eloise and Eloise at Christmas, as those movies have been a tradition with my mom and hold a special place in my heart. Elf, as it’s a classic and always makes me laugh, and most Tom Hanks movies including A Beautiful Day in The Neighborhood as I think that movie shows how we can love people well and show people that their life matters, is valuable, and they are seen.
What was the first concert you went to?
Not sure if I remember what my official first was, but I believe it was the Newsboys. My brother grew up drumming and he was an incredible drummer. He loved the Newsboys drummer because he had his drum kit attached to a stage device that would spin him around at all different angles. We loved their concerts as they truly were a full experience and show.
Content Marketing Specialist - Permobil Americas
Before joining Permobil as content marketing specialist, Hawken was a content strategist for the nonprofit CureDuchenne, creating blogs, emails, and social media content for the Duchenne muscular dystrophy community. For most of his life before that, he worked as a journalist, writing feature stories for BioNews, and reporting on the video game beat for The Washington Post. Following his passion for writing, Hawken graduated from journalism school at the University of Southern California.