A special blog contribution from Karla Leighty.
Prior to Lana's birth, our daughter-in-law, Krysten, knew something wasn't right with her pregnancy. The baby wasn't moving as much as she should have been,and the ultrasounds indicated she was smaller than expected. The decision was made to deliver Lana early via Caesarean Section. We received a text saying Lana had arrived—she was a good size, beautiful, and had the prettiest head of hair! We were assured Krysten was doing fine, and then there was silence.
I was staying at the house with Lana's older brother, and we received daily FaceTime calls from Mommy and Daddy, who looked so happy. It reassured me to see them, but I was continually getting texts and calls from others asking what was going on. The fact was, Lana's medical team was searching for answers as to why she was so sleepy and weak and didn't even have the strength to take a bottle. Once it was determined that Lana had Prader-Willi Syndrome, the learning, advocacy, and fundraising began.
Krysten and Lucas announced Lana's birth on social media when she was one month old. They posted the sweetest picture and provided others with information from The Foundation for Prader-Willi Research, assuring us that this disorder no longer looks like what you find on Google. During that month and in the subsequent months after Lana came home from the NICU, I felt so helpless. When our son traveled for work, I would go to Pittsburgh to help out. I could do laundry, help with Liam, cook dinner, etc., but Lana's care was 24/7 on Krysten.
I run races for various charities as a hobby. It is a social activity for me that benefits others. I searched out Prader-Willi races and found the "Harvesting Hope Distance Challenge." I shared the post announcing Lana's birth and my Harvesting Hope Fundraiser. Within minutes, I had exceeded my $500.00 fundraising goal! I was overwhelmed with the response from family and friends. Baby Lana's First Race with Gee Gee raised $5,565.00 for FRWR!
When the opportunity first came to run the NYC Marathon with Team FPWR, I was intrigued but just didn't think I was ready to take on a marathon. I had completed 2 previously and knew the time and training involved. I decided to wait a year to get in shape, expand my running distances, and train so that I wouldn't get injured. I also thought it would be a great way to celebrate turning 65. On January 1, 2023, I emailed the team coordinator and said I wanted a bib! My training went great! It takes a village to run a marathon, and I had one. I had friends almost always available to run/walk with me, listen to my non-stop running concerns, and just make it fun!
My fundraising success is advocacy, passion, and an incredible network of very generous family and friends. I shared my marathon story with anyone and everyone! Complete strangers would ask for the link so they could donate. I act like I am the only person on Facebook to ever have grandchildren, and I think my continual posts and pride help others feel like they know Lana as well. Both Krysten and Lucas shared "Lana’s Hope" links to raise money during their birthday months. Since all FPWR donations were doubled in May, that was an ideal time to fundraise. Throughout the months of fundraising, I made it a goal to help others learn about this rare, complex disorder. I asked parents of children with PWS to share a little about their child, and I shared the blog posts from FPWR. People requested that I share more of those stories because they found them so fascinating. I also shared the current research being conducted, so people knew where their money was going. I acknowledged every donation I received with a cute picture of my girl!
Each time I would get an email telling me there was a donation, I would get so excited! When I saw who it was from and read their kind words, I would then be overwhelmed with tears. I am humbled by the support I have received. There are so many worthwhile causes, and this year has been so difficult for many, yet they still chose to support our sweet Lana. I am beyond grateful. My marathon and training were really hard at times, but I was able to finish. Individuals with PWS and their families don’t get to cross a finish line, and that is the thought that kept me going. Lana's Hope and the HOPE for everyone with PWS is through medical research. I am so happy to be able to contribute in my small way.
The more I learned about Prader-Willi Syndrome, the more I realized that there was HOPE for Lana's future through medical research. Lana is so blessed with parents who are knowledgeable and seek out opportunities for her. She has had services since birth, and watching her develop and grow has been incredible. I worked in elementary education and special education for over 40 years, and I know we celebrate the milestones as they occur.
They are no less joyful if on a preset timeline or later. 'Childhood is a Journey, Not a Race,’ and it is such a blessing to watch her ride her pony in hippotherapy, learn to swim, take steps in PT, and communicate everything she wants/needs while saying very little. Lana brings joy to everyone around her. She adores her family, which was so evident from the moment they first brought her home. I love to watch her mind process as she pours over books and plays with toys for the longest period of time. My only wish for Lana is for her to continue to be this happy, and I know this is only possible if we can change the long-term impact of PWS through research.