How you can help Lesandra
Donate at any PenAir Credit Union location to the Benefit Account for Lesandra Jones. Visit www.YouCaring.com/LesandraJones and make a secure online donation. Attend the yard sale/ bake sale benefiting Lesandra at …
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How you can help Lesandra
What is osmotic demyelination syndrome?
Osmotic demyelination syndrome is a neurological disease caused by severe damage of the myelin sheath of nerve cells in the brainstem, more precisely in the area termed the pons. It is characterized by acute paralysis, dysphagia (difficulty swallowing), dysarthria (difficulty speaking) and other neurological symptoms. In milder cases, a patient recovers from temporary paralysis and lives independently again with mild paralysis of limbs or speech issues. In a majority of cases, a patient can expect Parkinson-like effects paired with lifelong physical and speech therapy, but may not be able to live independently without care. In severe cases, persistent vegetative state or locked-in syndrome can occur. In the worst cases, death occurs.
After a horrific and sudden diagnosis, Lesandra Jones' life will never be the same. And although her family isn't leaving her side, she needs Baldwin County's support as well.
In April, Lesandra, a 1997 graduate of Daphne High School who lives in Spanish Fort, visited the emergency room when she couldn't keep food down and became dehydrated after being prescribed a round of antibiotics for a sinus and ear infection.
She was admitted after a blood test revealed she was suffering from critically low levels of sodium and potassium. Within a couple of days, seizures hit. Just when the family thought she was improving, she became disoriented and stopped moving and speaking. An MRI revealed damage in the pons area of her brain.
Her family was given a diagnosis few ever receive — osmotic demyelination syndrome. Lesandra was left paralyzed and unable communicate verbally, although she did say her first word on June 3 — “Hi” — and is starting to move parts of her body voluntarily. It is possible that Lesandra will recover some movements and communication ability, but she will most likely need full-time care for the rest of her life.
What the future holds
Lesandra and her family are currently at the Shepherd Center in Atlanta, one of the nation's top rehabilitation hospitals, and her sister Melinda Jones Kerr is learning how to be Lesandra's full-time caretaker.
"You always hear of things happening to other people, but when it happens to your own family, reality hits you like a ton of bricks," says Melinda, who is a wife to her husband Jason and mother to three young boys, who have been staying with her in a hotel room in Atlanta since mid-May. “But there is nothing in this world I wouldn't do for her.”
The cost of Lesandra's illness long-term could be financially devastating to Lesandra and her family, easily surpassing an estimated $100,000 in uncovered medical costs alone — and that's based on the best case scenario.
Melinda says Lesandra's insurance company will not cover many necessities it deems “cosmetic,” like a fitted wheelchair that would keep Lesandra's head upright or a $2,800 special chair that would make bathing Lesandra much safer and easier. Insurance also does not cover the family's expenses while staying in Atlanta — accommodations, parking, food and gas.
How you can help
“My family has never asked a soul for anything,” Melinda says. “But now we need help.”
Lesandra is a responsible, caring Auburn University graduate, and before her diagnosis she worked for Willis Insurance in Mobile.
“She is one of those that gives and gives and gives and never asks anything in return,” Melinda says. “She loves everybody and is one of those people who always has a smile. She was always encouraging everybody else.”
So now, her friends and family are asking others to give back to Lesandra.
Awareness T-shirts and bracelets are available, and a YouCaring.com website and a PenAir benefit account have been set up to make donating easy. Through these fundraising efforts, $6,000 has been raised, and most of it has already been spent to pay for insurance deductibles and uninsured costs.
Nikki James, a 1997 Daphne High School graduate and long-time friend of Lesandra who is now living in Washington, D.C., is helping the family with fundraising efforts.
"This will be the third DHS class of 1997 alumni to have some form of a brain injury within the last three years," Nikki says. "And while I may not have all the money in the world to donate, I certainly have the resources to take action and help her and her family. A month from now people will have moved on with their lives, and she could still be like this. So our ultimate goal is to secure dollars now to help them with long-term funding."
Although there is much uncertainty in the family's future, Melinda says she is grateful for the people who have supported Lesandra. She hopes people will continue to show compassion to a woman who always gave love to everyone she met.
"To everyone that's donated so far, thank you so much," Melinda says. "God only knows what the outcome is going to be, but no matter which direction the days ahead hold, she's going to need medical attention that requires financial means beyond what any of us could have imagined or prepared for."
