Cure NF for Kaitlyn: 2019

Wednesday, November 6, 2019

#NF STRONG Memphis Walk 2019

Our annual #NF STRONG Family picture.

Kaitlyn proudly styling in her Houston Sparkles hat at the walk.

It's so wonderful fellowshipping with the families and friends that come out and support our cause!

Mid South Therapy Dog Teams

What a treat meeting the Mid South Therapy Dog teams that came out to meet our #NF Strong families! This is Batman posing with Jonathan as the Hulk, Kirsten as Black Widow and Chris as Captain America.

Although it was a bit cold....we had a wonderful event! Kaitlyn had fun being one of the photographers.

The highlight of this year's event was our special guest…Keith Paluso! He preformed for us and was so down to earth. Everyone loved meeting him! Thank you Keith for spending your morning with our #NF Strong families!

I love the bond Kaitlyn has with Dr. Pivnick! This woman is just a ray of sunshine! She always inspires us to be the best we can be and all things are possible! Thank you Dr. Pivnick for all that you do for us!

Monday, October 28, 2019

Future events

Memphis Cheer is #NF Strong!

Memphis Cheer Shooting Stars at Regionals!

We are #1

Cheering with Great Friends!

Memphis Cheer Shooting Stars!

Show Night before Regionals.

Thursday, October 17, 2019

NF Strong Walk ...through the years...watching Kaitlyn grow

Changing the world for Special Needs!

Kaitlyn's friend was crowned homecoming queen! These girls are changing the way the world sees Special Needs! So proud of these girls!

https://www.localmemphis.com/news/local-news/houston-high-schools-newest-homecoming-queen-has-beaten-the-odds-her-entire-life/?fbclid=IwAR0LiQb3gprHZWmY8SAHzKzBLLhzD9RCOMxQ4jCJxdv0K06T-Gi5y4cw8hc

Step Up for Downs Syndrome Walk 2019

We love supporting Kaitlyn's Downs Syndrome Friends especially Bre's Busy Bees!

St. Ann's Special Athlete's Day 2019

This is such a fun event! Kaitlyn got first place in frisbee and soccer and second place for bean bag toss. We look forward to Special Athlete's Day every year. Thank you St. Ann's and Christian Brother's High School!

Preparing for opening ceremonies.

Making memories with Best Friends!

Kaitlyn was asked to be the first torch runner for opening ceremonies.

Field of Friends with St. Patrick's Presbyterian Church

https://dailymemphian.com/article/7988/Collierville-community-brings-baseball-to-special-needs-through-Field-of-Friends?fbclid=IwAR1SkirucqkhvkSh_MoOhAYo5a2CBrgP5LDfQlFYDhGFjkBXDXO7Zvd-l5I

Kaitlyn had so much fun playing baseball with her friends at Field of Friends sponsored by St. Patrick's Presbyterian Church.

We love our special needs community!

Thank you St. Patrick's Presbyterian Church for this wonderful opportunity!

Lots of giggles!!!

Kaitlyn making more memories with her best friends!

Tuesday, October 1, 2019

Krop for Kaitlyn 2019

WOW!! Another amazing turn out for our 9th annual Krop for Kaitlyn! We are so blessed to be surrounded by such loving family and friends. It's always such a joy to see our talented guests. Thank you to all that help make this event possible and those who choose to spend the day with us. You all mean so much to us.

Last week we had the privilege of meeting the Hansen family. It's always wonderful meeting fellow NF families.... However.... This was different.... They are so gracious and kind-hearted. I love their positive outlook on life. They are an inspiration to all that learn their story. I can't express what it meant to meet them today. They welcomed us into their home and gave us a private tour of their home/studio/gallery. We can never thank them enough.
Please take time to learn about Jeff's NF story and visit Jeff Hanson Art

This is the masterpiece Jeff was working on during our visit. He is truly gifted!

Tuesday, August 6, 2019

St. Patrick's Presbytarian Church VBS 2019

Best friends enjoying the summer at VBS! Thank you St. Patrick's Church and the Parker family for making this event so extra special!!!

Life long friends!

Friends Forever!

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!