12 years before this, La’Niya lay in the NICU fighting for her life. Following a complicated delivery, La’Niya was born with visible disabilities and dangerously underdeveloped lungs. Because of her chronic respiratory failure, she was put on a ventilator. Doctors gently told Danielle that her daughter would likely not live to be 6 months old. There was nothing for Danielle to do but wait, and mourn that La’Niya’s life would be taken from her before she even got to live it.
One night as Danielle sat next to her tiny daughter as she fought to stay alive, she asked herself, ‘Why am I crying so much? Do I want her to be perfect?’ She observed her daughter. She was still here. More importantly, she was still fighting to be here. Every second was a choice. She could give up because it was hard, it hurt, or she was just tired. How much does a newborn know about resiliency, the grit and stubborn will it takes to fight to stay alive? She had every opportunity to quit. But that moment, La’Niya chose to take a breath. Then she took another one. Danielle wiped her tears away and smiled. ‘No,’ she thought. ‘She’s already perfect. She’s perfect for me.’
That night Danielle and La’Niya made an unspoken pact. Maybe all La’Niya would get would be 6 months, maybe less. Or maybe, she would get more. And if she did, they would see and do and experience as much as they possibly could.
None of us know how much time we have. Few of us have had to struggle through every day just to live to see the next. Fewer still have to overcome the obstacles associated with Arthrogryposis, with Microcephaly, with never being able to walk or breathe without help. But La’Niya’s life is an example. She demonstrates what it looks like to do as much as you can, with what you have, where you are.
On February 12, 2003, La'Niya's journey begins.
Already shattering the doctor’s prognosis, and keeping a smile on her face while doing it.
The bond between mother and daughter is a sacred, special thing. Here’s Danielle with her girl.
The Johnson family was able to travel to Disneyworld in November. La’Niya’s Make-A-Wish was to meet her favorite characters with her family.
Danielle called this trip “the best time of our lives.” La’Niya was happy and actively engaged, the whole family was together, and they lived in the moment. They never knew when these moments would run out.
Once home from Disneyworld, Danielle realized the real necessity of having a wheelchair-accessible van for her daughter. Before now, the only time La’Niya got to leave her home was on a school bus – and even then her wheelchair barely fit. The seating presented a safety hazard for La’Niya. They needed a mode of transportation, so La’Niya could be active and engaged with her family. They needed a van.
The problem was, Danielle had no idea where to start looking. Like many parents of children with disabilities, she had grown accustomed to not receiving help. For too long, she had done everything on her own. She had been left hanging by her insurance company; had suffered disappointments every time she get her hopes up about a fundraiser or a grant item. These families trust almost no one. Except each other.
What happened next would forever change La’Niya’s life. Danielle made a connection with a woman named Lonnie – both women had children with special needs, both used the same home health company. But they were about to have one more thing in common. Lonnie heard about Danielle’s search for mobility and independence for her daughter, and recommended a charity with whom she had a personal connection. Months ago, Chive Charities had helped her son Gavin secure an ADA van that drastically improved his daily life. More than that, the community had welcomed the Sharkey family with open hearts. They had cheered Gavin on through his victories, and sent positive energy through his hardships.
Receiving a grant item from Chive Charities is not the end of your relationship with us – it’s the beginning.
With a $46,000 grant from the Chive Fund, the Johnsons became the latest induction into the Chive Charities community. With this safe, adapted vehicle, La’Niya will get to experience as much as she can. At 12 years old, she has lived over 20 times longer than she was expected to. Every day, she defies the odds – because she’s a fighter. And this is a community of fighters.
La’Niya, welcome to the family.
The grants that changed La’Niya and Gavin’s lives were the sum of small, monthly donations made by our Chive Charities members. They are the heroes who make everything possible. They are directly responsible for making the world 10% happier. Join the movement HERE.
