It is hard describing someone that you love in a way that someone who never met them will understand. But we will try.
Sassy. Opinionated. Driven. Playful. Energetic. Creative. Joyful.
Harleigh was just over 2 years old when she exploded into our lives. She immediately took over our hearts and our house much to our old dog's chagrin. His new bed was her new chair so she could cuddle him. Our couch was her new jungle gym and she wanted to be just like her new dad.
Whenever we went anywhere, she would find someone and be their best friend for the entire time we were there, though she always forgot to get their name. She never wanted anyone to play alone but would stand up for herself if anyone tried to bully her or her friends.
Harleigh loved being active and participated in gymnastics, trampoline, swimming, cheerleading, soccer and diving. She had no fear of climbing and sometimes had trouble getting down because she climbed so high (at least when she was younger). As she got older, climbing to the top of things became a habit and her parents when asked to "Look at me" often would have to look up than at anything on the ground level.
At school, she thrived in one on one settings and being creative. But also insisted that everyone follow the rules. Her favorite classes were art and music but she loved her teachers fiercely. She did not like how popular cancer made her.
If there was a task that someone was doing, she wanted to do it too, She painted basements, gardened, and cleaned the pool. But she hated cleaning and it often became an all day affair to get her to clean up a small area.
In the summer of 2022, Harleigh was visiting with her grandma in South Carolina and started acting weird. She had a fall and busted her chin and nose. She then started putting too much food in her mouth and almost choking herself. A couple days later, it was noticed she was not walking straight. Since it was a few days after the fall, her parents thought, maybe concussion? At this point we will just watch. It is too late for them to do anything for the concussion. July 4th her eyes kind of looked glazed like a concussion and she fell over trying to sit in a chair to watch the fireworks. July 5th we took her to urgent care (at the main hospital) because things were getting worse. Not a concussion. Not an inner ear thing. They sent us to the emergency room where they did a battery of tests to figure out why this kid, who was diving off diving boards and swimming to the bottom of a pool and climbing all the things just a week and a half before suddenly could not walk straight. One of those tests was an MRI. And there, they showed us, was a ball of cancer in her brain. And not only was this there but it would be the thing that killed her. And that on average, kiddos get 9 months.
Suddenly, there was no more "when you get older" talks from her parents. She wanted to try something, "ok" was the answer. She got a phone for her 8th birthday which she used to call her family and friends when she had the mobility to do so and also recorded her own videos.
Her parents took their convertible and wrapped it in The Cure Starts Now information and she and they use(d) it to raise awareness on DIPG and childhood cancer funding. She was in multiple parades with her friends.
Whenever she was at the hospital, she required her devoted fans to bring tributes in the forms of presents to be allowed to come see her. This included her parents and grandparents. Sometimes, it included staff.
Harleigh fell in love with Broadway when she went to New York City. Her favorite show was Beetlejuice and she got to see it a couple times.
Harleigh was a fierce friend and loyal to those she loved. Though, if she made up her mind that she was not going to be your friend, it did not change. Much to the sadness of those that were not her friends a lot of times.
Harleigh passed on December 5th, 2023 at the age of 9 after a 17 month battle with DIPG. Her brain was donated to research and scientists were able to produce a cell line off of her cancer tissues. This means that though her body has passed on, she is STILL fighting cancer.
"At the beginning of this awful journey we were overwhelmed with unknowns. The Cure Starts Now helped us find a community, understand the disease and our choices, and find the right resources for us. These are people who have a need to find a cure; who are dedicated to that mission. Every dollar donated is another dollar closer to a cure for all the children out there." - Josh and Jill Hines
The Cure Starts Now (501c3 Federal Non-Profit) is one of the only cancer foundations dedicated to a “homerun” cure for all cancers, starting first with one of the most deadly and difficult cancers: pediatric brain cancer. Many experts believe that the lessons we learn from fighting pediatric cancer may in fact provide us the critical first step in winning the battle against all forms of cancer, both pediatric and adult.