Your Money At Work

A Lasting Mark,

      Kiah and I would like to thank A Lasting Mark for their incredible generosity. Your ability and willingness to help us has been life changing and will never be forgotten!! Your foundation’s name is ever so appropriate! A Lasting Mark indeed!

We applied and were granted a scholarship to attend the kids get Scleroderma too Convention in Denver Colorado. We wanted to go to this convention more than anything. Being diagnosed just shy one year from date of the convention we felt so incredibly lost and alone. We were raveling from the consequences that this disease has handed us. Leaving us in a financial hardship and our entire family an emotional mess.

It wasn’t until we got to the  KGS2 convention that I even understood the severity  this diagnosis had affected our beautiful, daughter Kiah. There is this quote I love. “Life is too ironic to fully understand. It takes sadness to know what happiness is. Noise to appreciate silence, and absence to value presence.” This quote rang so true. I didn’t fully see how this disease stole my daughter’s spirit! Her true happiness, until I saw her at KGS2. There was a genuine laugh I hadn’t heard in almost a year! There was life back in her eyes! Kiah walked away with lifelong friendships! Infact Kiah didn’t even sleep with me. She slept with one of her new best friends in their room! The pictures taken say it ALL.

Kiah walked away feeling empowered! It’s safe to say I watched Kiah walk into KGS2 as a victim and walked out a VICTOR! Luke’s story we will NEVER, EVER forget. He made us laugh, and cry! He gave us hope! Thank you Luke for being you! Thank you A Lasting Mark for funding our flights, fees, transportation,and lodging we will forever be grateful!

                               Sincerely,

           Trina Florence & Kiah The Warrior

     Jessie Clark is from New Enterprise Pa and is a 12 year old middle school student in the Northern Bedford County School District. She has 4 brothers and 1 sister. She enjoys dance and has been dancing since she was 4. She also loves to sing.

  Before Scleroderma Jessie was an average 11 year old girl. She played soccer, basketball and danced. Jessie was diagnosed with Diffused Systemic Scleroderma on July 12,2018. The diagnosis came less than 6 weeks before she began middle school. The summer of 2018 was spent making several trips to Children’s Hospital of Pittsburgh for multiple tests and information.

  Many things in Jessie’s life have changed since her diagnosis. She now takes many different medications all of which must be monitored for side effects as well as their effectiveness. One of the side effects Jessie struggles with is low blood pressure. Because of the low blood pressure we have had to cut down on one of her meds even tho it was effective. Insomnia has also become an issue.

  Starting middle school can be a difficult transition for any child but for Jessie it had even more challenges.Almost daily she found things she was capable of doing the previous  school year but could no longer do. Jessie is ADHD and due to low weight was unable to take her medication thus making it more difficult for her to focus. Because the range of motion has been restricted in both of Jessie’s hands she has a hard time writing, her hands ache and cramp. She was unable to open her locker so her lock had to be removed.

  Jessie also suffers from Chilblane’s and Raynaud’s Phenomenon. When Jessie’s hands and feet become to cold they turn blue due to reduced blood flow this can lead to tissue damage ,ulcers and possible amputation. This has had a huge impact on Jessie She is no longer able to go out for recess with her friends when it is cold out. She was unable to go outside enjoy the snow this winter with her brothers. Because Jessie was unable to go out they chose to stay inside with her. She could not sign up for soccer this year because of her inability to be in the cold. Because of her restricted range of motion she was unable to play basketball this yea She has always wanted to be a cheerleader but feels that trying out is an unrealistic goal because of her range of motion restriction and her inability to do a cartwheel and split. She continues to dance but can no longer do all the moves.

  Jessie’s disease has impacted everyone in our family from finances to emotions and beyond. What was once normal is no longer normal and must be reconsidered.Simple things like gripping the brakes on her bike or the 4 wheeler as well as shade for the pool so she can still get the benefits of being in the water.

  In Jessie’s eyes the disease continues to steal her normal, her independence. Things like opening a water bottle, tying her shoes or even putting her own laundry away.

  I cannot thank A Lasting Mark enough for all they have done and are continuing to do. Because of the foundation we were able to attend the convention in Colorado. We not only received information we also received hope,love and acceptance and Jessie gained a mentor in Luke and life long friends. she has hung on to the words he spoke at the convention and they have helped her to get through some very difficult situations. When Jessie left school at the end of May she appeared to be fine but when she returned the end of August things were different. Many of the students had questions. One of the things Luke encouraged Jessie to do was raise awareness. Because of Luke she was able to do just that. Jessie was also able to make friends with two girls at the convention. The girls stay in touch and speak weekly. Those friendships are priceless and would not have been possible without the help of A Lasting Mark. Jessie now wants to use her voice to raise awareness and support for Juvenille Scleroderma so that a cure can be found.