Cure NF for Kaitlyn: 2020

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!

Wednesday, June 24, 2020

GOD led us to CURLY

Kaitlyn was struggling with depression due to all the seclusion caused by covid-19. We put our faith in God to find a solution for the sadness setting in our home. Getting a dog was not on our agenda. However, while scrolling on Facebook one day I came across Curly's picture. I was oddly drawn to click on the picture to find his sweet story. I shared the story with my husband who instantly began communicating with Curly's foster home. Within 2 days we went to meet Curly. It was love at first sight for us ALL! Curly is the missing piece to our family. He has brightened all of our spirits! We are so grateful for the gift that God has led us to!

Monday, May 25, 2020

Kaitlyn's Story 2020

Sparkles Cheer Photos

Kaitlyn is so blessed to be a part of the Houston Sparkles! The coaches and team mates are so wonderful!

2nd annual Love Gala VIP fashion show for Down Syndrome Feb 2020

We love showing our support for one of Kaitlyn's best friends, BREONNA!

Kaitlyn modeling her formal and casual outfits on the runway.

The Memphis Cheer Shooting Stars perform at the Southaven Showdown Competition Jan. 2020

I love how the team proudly show off their metals...they even wore them to school.

The smile says it all!

What an AMAZING team! We love our Memphis Cheer Family!

Lunch with Tim Tebow!!!! Feb. 2020

We were invited as special guest to lunch at Union Baptist Church (location of Prom) to visit with Pastor Jeff about our prom experiences. Imagine our SHOCK when Tim and Demi-Leigh walk in! The noise level of the room changed so dramatically during their entrance that it put Kaitlyn into sensory overload. She was extremely shy the rest of the visit, but she gathered her courage to take a couple of pictures.

Tim and Demi-Leigh are the most genuine heavenly people I've ever met. They are truly beautiful inside and out!

TimTebow's Night to Shine Prom-Memphis Feb. 2020

Night to Shine is always an AMAZING event! Chris volunteers as a escort for other special needs friends, Carrie hangs with the Momma-razzis as Kaitlyn dances the night away.

Kaitlyn walking the red carpet after her limo ride with all of her friends.

We worked several days and nights to get Katy's Bug running for prom.

Tuesday, January 14, 2020

I just wanted to keep y'all updated on Kaitlyn. The MRI of her trunk results came in. The doctor said that Kaitlyn is suffering from the pain due "to the tiny tumors in the unprotected area". They will be keeping a very close eye on the tumors due to the high risk of cancer because of the "deleted chromosome NF".

The only children's pain clinic in Memphis is at St Jude. Only the patients of St. Jude have access to it. She can't go to the adult pain clinics until she's 18. Then she will go to West Clinic. For now they are sending her to the children's pain clinic with the Children's Hospital at Vanderbilt in Nashville next week in hopes they can help find some relief for the pain.

We knew the day would come that she will be dealing with chronic pain. I'm grateful she got 17 years before the pain got out of hand. She is taking one day at a time and fighting through the pain the best she can as she enjoys life as much as she can. We trust in God's plan and know she is in good hands with wonderful doctors, family and friends!

NVS Dance "A Chance to Dance"

NVS have designed a class for Kaitlyn and her friends to learn different kinds of dances. They are loving it! Thank you NVS!

University of Memphis Cheerleader Show Night

What a wonderful experience for Memphis Cheer's Shooting Stars! They got to perform during the U of M show night! The support and acceptance was incredible! The audience gave the Shooting Stars a standing ovation! Such a joyful moment!

Houston High Talent Show

The Houston Sparkles had a BLAST showing their stuff in the talent show with Coach Jessica.

Houston Sparkles in the Germantown Christmas Parade

We love participating in the parade. The team is so proud and loud and cheer their hearts out!

Memphis Cheer Shooting Stars team picture day!

We are so blessed to be a part of the Memphis Cheer family! Everyone is so supportive of the Shooting Stars Team. I love how our team has grown!

St. Patrick's Presbyterian Church Special Friends Christmas Breakfest

What a special day with Santa and amazing friends! Thank you St. Patrick's Church!

Wonderful breakfast, lots of pictures, shopping for gifts, decorating cookies and more!

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!