Help Carrie raise money

Kaitlyn is a 22-year-old fighting neurofibromatosis type 1. She was diagnosed with NF1 at six months of age. She was a full-term pregnancy with little complications. At birth she was put into ICU for a few hours due to breathing difficulty. Immediately during her first days, Kaitlyn was very fussy. It became clear she was having bowel problems. She was taken to doctors and treated for stomach issues. She was then sent to a genetics specialist because of a café au lait spot on her stomach. More and more “Katy-bug” spots started to appear as she got older, along with freckling under arms, hair on her lower back, posture issues etc. It was quickly suspected that she had NF. A DNA blood test confirmed that she indeed had “deleted chromosome 17” neurofibromatosis type 1. We were told her life expectancy was 9 years and she wouldn’t be able to learn past the ranking of a few years old. A bone scan was done which revealed a lesion on the left side of her scull between her eye and ear. She then started getting MRIs done regularly. Each MRI showed more lesions. As of 2020, she has 5 lesions inside of brain, one outside her skull, one between skull and scalp, one in her hip, one on her lung, around her ribs and in her arms…that we know of. During the last couple of years, hundreds of neurofibromas have developed on the outside of her body causing difficulty and pain in joint areas. The lesions in her brain push on nerves and have caused uncontrolled emotions, difficulty understanding, memory problems, night terrors, seizures etc. Luckily, she appears to have outgrown her epilepsy. Her last seizure was in May 2012. In April of 2015 she had a 6x9cm tumor removed from the back of her head between the scalp and the skull. It has since grown back as 2 different kinds of tumors layered together. They were removed in October 2024. She still has dizzy spells and headaches, but not as bad as before surgery. The tumors in her arms cause pain while using hands. The tumors on her feet cause pain while walking, standing, etc. She also has an uncountable number of neurofibromas through the trunk of her body. These tumors cause debilitating pain. In order for her to enjoy life as much as possible without being subjected to loopy pain meds, she takes minimal pain meds and occasional Acupuncture to relieve some of her daily pain. 

Kaitlyn started therapies before she was one year of age. During age 2 to 3 years of age she attended a local special needs school, that specialized in learning disabilities in children up to age 3. Through grade school to high school, she received special education, physical therapy, occupational therapy and resource classes. In high school, she was in all special education classes focusing on job skills, self-care tasks, cooking and home chores. Her IEP team worked together to give her the best education possible to prepare her for the world. She can learn but it needs to be done by repetition and extra time. She is approximately at the 4th grade level compared to typical peers. Part of the special needs diploma was working as an intern at local businesses to learn hands on job skills. She was trained to be a teacher’s assistant in the local middle school. Her dream job is helping others like her in the school setting. She earned an occupational diploma in spring 2021. She aged out of school in fall of 2024. Obtaining a job in a school is harder than we thought due to the limitations to keep her SSI services. We have turned our focus to volunteer opportunities with special needs, summer school and camps plus working with the elderly communities. 

Kaitlyn has always loved baby dolls. She was gifted a Real Care doll (like the ones the schools use) a few years ago. Her doll's name is Lilly. Kaitlyn got this idea.... to take her doll to retirement communities so the people there could enjoy Lilly as much as she does.  Kaitlyn started making calls on her own and teamed up with a local facility. She now provides "Baby Doll Therapy" with the memory care guests monthly. It has filled Kaitlyn with joy, pride and a sense of purpose to visit these new friends with Lilly.  The ladies are enjoying Lilly so much that Kaitlyn used her money for a baby boy, Johnny Roy. Kaitlyn was recently presented with an award for giving her time and sharing her dolls with the community.  So proud of Kaitlyn thinking outside of the box to give back to the community and spread JOY. 
Other plans are....Kaitlyn will be assisting with a local church Vacation Bible School working with typical students of preschool and kindergarten ages this summer in addition to volunteering at Extended School Year special needs summer school for our local school district.

Kaitlyn knows God made her different and does her best to enjoy every day to the fullest. She is very active in the special needs community…cheer team, dance team, baseball, kickball, multiple proms and many other special needs events provided by our hometown and local churches. We love camping and enjoy car shows with the local Volkswagen club. We have joined the craft show community sharing her new hobby of beaded items (pens, bracelets, and keychains). She has out learned and out lived way pass the doctor’s expectations of 9 years old. 

Every day with Kaitlyn is a blessing!