Howell sisters are Fighting H.A.R.D. to help children with rare diseases
Two Howell High School students and sisters are hoping you'll join them in Fighting H.A.R.D (Having A Rare Disease) to help children with rare diseases and chronic illnesses at the Jersey Shore.
The Fighting H.A.R.D. Foundation is a 501(c)3 organization that planted its roots after Allie (now 16-years old) became ill earlier in her youth with Crohn’s Disease, Juvenile Rheumatoid Arthritis and Anxiety.
It was then that one of her doctors instructed her to find a foundation that could provide the all around support she needed.
While there are some organizations who provide assistance to children with certain rare diseases, the Crocker's couldn't find one that supported all rare diseases.
That's when 'The Fighting H.A.R.D. Foundation' was born at a time when just Allie was sick but it would soon be something her younger sister Jonna (now 15-years old) needed just as much.
Allie says that once Jonna became ill with gastroparesis and SMA Syndrome, she became more concerned with her sisters condition then her own.
"I couldn't have imagined what it was like to watch someone that you love so much go through it, especially to the extent that she was going through it," Allie said.
Jonna loved to eat anything she could growing up because she was hungry but also just really enjoyed having all different kinds of things to eat.
"I was that kid that everything you gave me I would eat," Jonna said.
While she can still have some of those favorites, her diet has been limited with her diseases.
"I have gastroparesis so basically my stomach muscles are paralyzed and so they don't work and food doesn't go through," Jonna said. "I've pretty much been through everything from feeding tubes, PICC lines, TPN and I actually have something called a gastro pacemaker and there are less then 100 kids in the whole entire world that have it."
She goes out to a special facility in Ohio every 8-weeks for treatment and it's something she describes as "life-changing".
"There have been times when I cannot take a bite of food or a sip of water and I'm getting fed nutrition through my veins," Jonna said.
She can still eat just about anything but has to manage the portion size of what goes on her plate.
Her sister Allie, while battling the pains of arthritis, has found an outlet that allows her to have fun but also not let the disease prevent her from running.
Allie is a member of the Howell High School Track & Field and Cross Country teams where conditioning and endurance are important parts of finishing a distance race.
"It's been difficult and there have been points where I couldn't really walk at all or get out of bed or pick things up because my hands were so bad," Allie said.
She has been able to run during times when the pain is under control and not an overbearing burden.
"It's actually done wonders for all of my joints, I'm in the best state physically right now than I've ever been in," Allie said.
Not everyday is easy on the track, the disease finds a way to force Allie into a day off.
"There have been days when I haven't been able to run and when I get sick I do have to take off," Allie said. "I think finding the balance is a little bit difficult so you have to take advantage of the good days you have."
One part of battling rare diseases Allie and Jonna want to help others overcome is public perception.
Jonna's gastric pacemaker and nasogastric tube, which help her get nutrition, has gotten her some looks out in public that she's learned to play off.
"I would go to the store or out with my mom and a lot of people stare, a lot of people would stare," Jonna said. "I felt like people were staring at me in a negative way but then I realized that they're probably just curious."
As her older sister, Allie became very upset when people would stare or make looks at Jonna.
"I used to get really mad when people who stare at her, I was really so angry with it because she's such an incredible person and for people to only see what's on the outside was infuriating to me," Allie said.
While Allie has an outlet in Track & Field, Jonna has found thriving success in the classroom and with clubs at the high school.
Allie took a brunt of similar comments that Jonna did when she had to wear knee braces for her arthritis, that she was eventually able to find some humor in.
"I used to wear two giant knee braces because my knees would dislocate and people would call me bionic but I thought that was funny," Allie said.
Something that made Allie feel more self-conscious as she was battling anxiety was her need to use crutches.
"When I was younger I used to be on crutches all the time and people would start to ask if I was faking it," Allie said.
She found more hurt from gazes while taking a steroid to treat her diseases.
"It made me gain a lot of weight and it did take a toll at how I looked at myself after that because it was hard...I didn't really understand what the weight gain was from and I had a chipmunk face and people would just look at me," Allie said.
Allie and Jonna want to be seen for who they are instead of what they have which is a goal they want to share with other children who have rare diseases.
They continue to impact the lives of many Jersey Shore families and those beyond.
"We send care packages all over the country just to let them know they're not alone but we financially assist 35 families right now in Monmouth and Ocean Counties," Jonna said.
The financial assistance comes in great need for families who are not getting as much coverage from their insurance company.
"This is helping them pay for things that insurance doesn't cover, there's a lot of those things," Jonna said.
They also hold fundraisers, awareness day and plan activity nights for those in the rare disease community and beyond.
"I think the emotional and financial support is really important which is why we want to continue growing to be able to help more families," Allie said.
To learn more about the Fighting H.A.R.D. Foundation as well as the stories of Allie and Jonna Crocker, watch the video below and check out their website.