Posted October 3, 2020

Katie is 25 years old and was born in St. Croix Falls, WI. She currently lives in Balsam Lake, WI with her mother and stepfather. Katie says her childhood was normal. Her mom and dad were divorced, so she would spend every other weekend with her dad. Katie also spent a lot of time with her grandmother with whom she created a close bond.

Katie was diagnosed with 22q at the age of six months. According to Katie’s mom, she was born after a non-eventful, full-term pregnancy. The only problems Katie had at birth were an inability to latch on when feeding and hip dysplasia. However, when she was in the nursery, Katie was diagnosed with a soft cleft palate and a heart murmur. Otherwise, her stats were fine and she was released and sent to a children’s hospital two days after her birth. Katie was examined by a pediatric cardiologist at the children’s hospital and was diagnosed with Tetralogy of Fallout and would require surgery when she was six months old. Also, Katie was scheduled to have surgery when she was nine months old for her soft cleft palate. Finally, during her first week of life, Katie was fitted for a brace for her hip dysplasia. Over the next few months, Katie saw the cardiologist monthly and the orthopedist for brace adjustments. It wasn’t until Katie was six months old when she was diagnosed with DiGeorge Syndrome. The diagnosis came about one month prior to her first heart surgery. Katie is scheduled to have her fourth heart surgery in December of this year. Her last surgery was five years ago.

Growing up, Katie achieved most of her developmental milestones on time. She walked a little later at 14 months but had already had two open heart surgeries by that time. Katie’s speech wasn’t developing as it should, so she had weekly speech therapy until she was four years old and her mother learned sign language to communicate with her. Katie’s speech was perfect after she had pharyngeal flap surgery for her pharyngeal incompetence. She also had scoliosis and wore a brace for six years. “This didn’t help her self confidence, but she handled it like a champ!” exclaims Katie’s mom.

Even though she was mainstreamed in school, Katie faced some challenges. School wasn’t easy both academically and socially for her, but she still graduated with her class and finished one year of college at the University of Wisconsin Barron County in Rice Lake, WI. Katie struggled with math and comprehension. It took Katie longer to learn and retain information. As a result, her college math professor tutored her. Also, according to Katie’s mother, she was slower to develop the social skills of her peers. As an adult, Katie continues to struggle with social and emotional issues as well as depression and anxiety. Katie’s mom says that she has a wonderful and sweet personality but a short fuse. Katie admits she gets frustrated and upset easily, but she’s continuing to work on improving in this area.   Katie’s mom raves about her, “Katie makes me proud every day. She’s a brave young lady that despite many obstacles, she endures every day and pushes through. She is the first one to help when possible. She’s so kind and caring.”

As a child, Katie enjoyed riding four-wheelers and swimming. Today she spends a lot of time with her nieces and nephews. “Katie is an amazing auntie,” brags her mom. Despite her struggles with math, Katie works full time as a bank teller. Her current hobbies are reading, watching Netflix and cooking on occasion. She hopes to have a family of her own one day, either naturally or by adoption.

Katie recommends that children growing up with 22q find a camp to attend where they can meet new people. She attended Camp Odayin for children with heart defects for eight years where she met a lot of people like her herself and made lifelong friends including someone who also has 22q. “It’s ok to be different,” Katie explains. “I use to feel alone or odd, but now I just act like myself. I think going to camp and meeting more people from around the world helped me realize that not everyone is the same.”