Posted September 21, 2020

Shelby is 17 years old, born in Michigan, but moved to Alabama the week of her first birthday. A cardiologist has always been a part of her life, but she was 2 before we received the diagnosis for 22q deletion syndrome. Children’s Hospital of Alabama was a home away from when she was younger, traveling back and forth sometimes up to 7 times a month for doctor appointments and surgeries. Conditions and specialists have come and gone over the years, but cardiology remains the same and now endocrinology, for hypo parathyroid, is a part of regular care. This past January Shelby had knee surgery for patella stabilization, her kneecap would frequently slip out of place and cause her to fall, she is now walking with her kneecap staying in place. We are at a stage of dealing with finding new specialists out of the pediatric care, this is a little scary after all this time having built trust and relationships with current doctors.

Shelby started with early intervention and then transitioned into public school where she stayed until 3rd grade, we then started homeschooling which made illness and doctor appointments much easier to manage along with learning what she needed at her pace. Shelby will start her senior year this August. Shelby was a girl scout from first-year brownie to 1st-year senior, earning both bronze and silver awards and meeting the Alabama Governor for the silver award at the capital. Other childhood activities include karate, horseback riding, and volunteer work. Shelby started quilting when she was 11 years old with the Ladybug quilters group. After her first quilt was complete Shelby started to donate each quilt thereafter for cancer and 22q. When the 22q clinic at Children’s of Alabama opened, Shelby was one of the first to be seen and donated a quilt to the clinic. 22q quilts have been sent out of state and some have stayed here in Alabama. A journal was just started by Shelby to keep track of her quilts, the pattern, the quilt number, and where they go to. It is such a joy when we get a picture of the person with the quilt. Currently, quilts number #27, #28, #29 are in the works. Each quilt has a label that has Shelby’s name, quilt #, year completed, and for the 22q quilts a quote she has adopted, “I have 22q, but 22q doesn’t have me.”   All of Shelby’s quilts are blessed before they are given away. Shelby has taught others to quilt over the past year. Shelby also likes crafts of all kinds including drawing and painting and has started vegetable gardening this year. Shelby has a goal of becoming an interior designer, she has designed 2 bedrooms and a bathroom so far, and is being referred for evaluation for the type of college or further education will be best for her.

Camping with family is a wonderful way to spend time, especially with the current covid19 situation. Shelby does not care where we go camping she truly enjoys it all. We have camped close to home and as far as Fort Wilderness at Disney World, camping in wooded areas and beaches. When Shelby was younger, we had a tow-behind, and she shared a space with her older brother. Currently, we have upgraded to a 5th wheel, and with big brother away at college, Shelby has her own room and full bath. Some activities we do while camping are bike riding, hiking, puzzles, and Shelby likes to have a latch hook kit to work on, she also likes to help plan the meals for all our camping trips.

Shelby is a positive girl, once she is set on something, she works hard to see it through. Not everything comes easy but with hard work, she usually reaches her goal. We have traveled through the years to different 22q conferences, the international 22q conference at Disney and her favorite which is Children’s Nationwide in Ohio where she gets to be with teens her age all day. We do our best to reach out and connect with other 22q families, sharing what we can and making new friends along the way. Shelby has had a voice in her health care from a young age and she is great at explaining 22q to whomever she meets.