Cure NF for Kaitlyn

Wednesday, May 26, 2021

2021 Tim Tebow Night to Shine Prom

The Tim Tebow Foundation and Union Avenue Baptist Church did a wonderful job giving Kaitlyn and her friends a great night to remember. Although covid limited what could be done.... the drive by prom was very fun for everyone. Kaitlyn and family volunteered to decorate Katy's Bug and cheer for all the guests as they drive by.

Friday, December 4, 2020

Spreading Christmas Joy in Katy's Bug!

This year we decorated Katy's Bug with 600 fairy lights that dance to the beat of Christmas music as we drive around town making people smile. We are having so much fun!

Spreading JOY one SMILE at a time.

We love seeing people smile, thumbs up, flashing headlights, waving and hearing the honks as we drive by. My theory is... for some people it may be the only time they smiled that day.

Monday, November 9, 2020

2020 #NF STRONG walk done virtually from Rides 4 Rugrats in Dyersburg, TN

What an amazing day! This year's annual NF Strong walk was virtual so we did our walking for NF Strong at the Rides 4 Rugrats car show in Dyersburg, TN. Kaitlyn entered her car in the show with 295 other vehicles... including the General Lee. (That really shows my age). This show was inside and outside of the Dyersburg Mall. We showed off our NF shirts and did Team Kaitlyn for NF segments live from the show. Thank you so much for all of the family and friends that supported Team Kaitlyn in her fight against Neurofibromatosis! It's your love and support that fuels her to keep fighting. We just can't thank you enough! We are so blessed!

Monday, November 2, 2020

Team KAITLYN through the years!

Click link to play slide show

https://spark.adobe.com/video/bG7qsuc1EwWmf

Friday, October 23, 2020

Showing off Katy's Bug

Our new family hobby is going to car shows. Kaitlyn is absolutely loving it!

Kaitlyn got hooked on Volkswagen when she was a toddler watching Herbie. She would get excited whenever she saw one, she never grew out of it...lol. For her 16th birthday we got Katy's Bug to drive her around town in, because she can't drive. Little did we know that it was a limited edition one of 500 made that year with a turbo manual transmission in the unique snap orange color. After joining the Midsouth VW Club, we all got the "VW bug". The smile on her face says it all. She looks forward to the shows and just glows at the events!

Eureka Springs Volkswagen show was our first show. It was a dream come true for Kaitlyn. VWs everywhere!

We are really enjoying our new VW family with the MidSouth VW Club! Thanks to them we have outings and events to look forward too while still being Covid-19 safe.

We have been attending the weekly Hot Rod show in Collierville Square. Kaitlyn is so proud of her little bug!

Volkswagen cars are "Happy Cars". Strangers smile when they see a bug. Children wave as you drive by. VWs bring joy to all around and they make the happiness in your heart grow every time you drive one.

Sunday, August 9, 2020

Kaitlyn's 18th Birthday Parade

We had a few minutes between the Midsouth VW Club parade and 40 cars of friends and family parade. She got to see lots of friends, family and teachers. Wow! Thank you so much for taking time to make Kaitlyn smile! We are so blessed!

Kaitlyn turns 18!

Kaitlyn arrived at our house and sees all the decorations. She's figured out we are having a parade. She's thinking it's a parade of friends. She tells me about these cool old Volkswagens they passed on the way home.

Then the VWs come around the corner! We told her they were there for her. She was crying she was so excited. The Midsouth VW Club was just incredible! She took pictures with each car. They were just awesome... the cars and the people! They even brought her collectable VW items and gave her a membership to the club... shirt, decal and all. I will never be able to thank these wonderful people for everything they did for Kaitlyn!

Why this blog was created...

This blog was created so that Kaitlyn's family and friends can keep up with her doctors and other events in her life. It was also created for those parents that have questions and are still at the frightening stage of learning about NF. When you first hear about your child having NF, it is so scary....all of the questions and concerns that go through a parents head is overwelming. I'm hoping this blog helps people understand more about NF. I write it in simple terms because it makes it easier to understand and explain. All of those formal terms and high tech words start to sound like another language. So I have simpified it so that kids and parents can relate to what is going on. My number one mission is to spread the awareness of neurofibromatosis to those families that have it and don't know it. I can't imagine learning about this when "it's too late".

Medical history

Kaitlyn 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 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 but not as big as the original. The tumors in her arms cause pain while using hands. She also has an uncountable number of neurofibromas through the trunk of her body. These tumors cause debilitating pain. She is now a patient of an adult pain clinic in addition to ENT, eye specialist, neurosurgeon, neuropsychologist, and genetics specialist at University of Tennessee plus pediatrician and orthopedics doctors. She has recently discovered acupuncture is a big help to relieve some her daily pain.

Therapies and education

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, physical therapy, occupational therapy and resource classes. Now in high school, she is in all special education classes focusing on job skills, self-care tasks, cooking and home chores. Her IEP team work 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 she is working towards allows her to intern at local businesses to learn hands on job skills. She is being 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 continues to attend high school to focus on her job skills in hopes of having a job when she ages out of school. 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…2 different cheer teams, dance team, baseball, self-defense class, multiple proms and many other special needs events provided by our hometown and local churches. She has out learned and out lived way pass the doctor’s expectations. We know every day with Kaitlyn is a blessing!