CNN Covers How California Health Care Budget Cuts Threaten Life of Little Girl Suffering From Deadly Cholesterol Disease
Here is a story on sweet little Jessica Leoni who suffers from the same disease as Addi and Cassi. Her health care is being threatened by California’s Health Care crisis. Here is the story from CNN.
LOS ANGELES, California (CNN) — Anthony and Lisa Leoni have little time to worry about whether California’s budget crisis will affect their daughter’s life-sustaining care.
A steady stream of nurses, caregivers and therapists visit 12-year-old Jessica at home around the clock. Jessica suffers from a rare and fatal disease called Niemann Pick Type C. A cholesterol imbalance destroys healthy cells in the liver, spleen and brain.
Although Jessica led a relatively normal life before the illness worsened, her mother always knew the disease would eventually take over.
“Jessica was playful, happy and loves people. My heart was always a flutter because you never knew how many moments you’d get,” Lisa Leoni says.
In Jessica’s case, a grand mal seizure suffered Memorial Day weekend 2005 brought a world of hurt to the Leonis.
At the height of her symptoms, Jessica suffered up to 60 seizures a day. The disease, also known as NPC, has stolen her ability to walk, talk, eat or even breathe on her own. An oxygen machine pumps air into her lungs around the clock.
Anthony Leoni knew they needed help.
“If you told us 10 years ago this is how your life is going to be, I would have said we’re not capable. We don’t have the training, ability, we don’t have the energy, we don’t have the stamina.”
They found Bill Feeman of Westside Regional Center.
“When you walk into this home and you see Jessica, [you] just fall in love with her,” Feeman says. “She is a sweet soul — you see her, she’s physically helpless, yet there’s a light that shines out of her eyes, it takes you in.
“When you meet this family and you see how hard-working and involved they are, you just wanna do everything you can to help.”
Feeman worked to find in-home support in the form of nurse caregivers, therapists and medical supplies.
“This family also has all the normal responsibilities of raising a family. They have to pay their mortgage, they have to feed their family, they have to go to work. So when you have someone as medically involved as Jessica is, and you’re talking about all that worriment and responsibility of your child being ill and on top of that you still have to … bring home a paycheck every week in order to pay your bills, you need a lot of help.
“You have to be awake at night with Jessica. She cannot be left alone for even five minutes where someone is not awake and attentive to her needs. So you’re looking at a family, who when I first met them a year ago had some help in the home but nowhere near enough and they were exhausted. They were trying to be caregivers, nurses, doctors, and then get up and go to work during the day and still support their family.”
“We pieced all these programs together. We finally got everything in place where they can be parents again, which is a wonderful thing. And that’s what scares me about these budget cuts … it scares me a little bit that things might start moving backwards.”
One of those caregivers is Carmen Bailey, a certified nurse assistant and home health aide with Caring Connection. She has been working with Jessica for more than two years.
“It’s been an experience. I call her my angel. I bathe her, groom her, position her, massage her to make her comfortable.”
Carmen may be affected by the budget cuts.
“I also have to live to keep on going. I know I will still be here and whatever I need to do extra I’m willing to do it for the family and Jessica.”
Westside Regional Center is one of 21 state regional centers providing services literally from birth to death.
They work with people diagnosed as developmentally disabled, including those with cerebral palsy, epilepsy, autism and mental retardation.
Mike Danneker is executive director of Westside Regional Center.
“Our budget is in the 4 billion dollar range for about 240,000 clients in California,” Danneker says. “Westside gets about 140 million dollars a year and we have about 7200 clients.”
He believes the California budget fix will cut a half-billion dollars statewide from their budget.
“It’s going to affect everybody. Camps, therapies like art, horseback riding, some of the things people have done for decades will be gone. We’ll have to cut back the number of hours to about 300 hours a year. We estimate 40 percent of California clients have over 300 hours a year.”
Anthony Leoni has this to say about impending cuts to Jessica’s life-sustaining care.
“It’s absolutely frightening to think about what happens if the services go away. They’re absolutely essential to keep Jessica going.”
Jessica’s childhood friend Kristina Carmickle stands by her bedside.
“We did a lot of tap (dance) together, that was Jessie’s favorite. Once you have a friendship that’s big enough, you’re always wishing for the best.”
Anthony Leoni sums it up this way: “We know that there are other families that have challenges similar to us, sometimes even more dramatic than ours, and if we can serve a purpose or a role to help bring the awareness to public what it takes to take care of a family like ours, then we’re willing to make that effort.”
Here is a video we put together for Oprah last year about the issues we are facing with health care and drug development system in the United States and what happens when your children are dying from a rare and fatal cholesterol disease like Niemann-Pick Type C (NPC). This video was made when our twins Addi and Cassi could still talk and sing — they have lost this ability due to “Childhood Alzheimer’s.” I hope everyone in government will watch this video and look at our website to understand why the entire health care process is broken, especially drug development. Would someone please forward my video and website to Nancy Pelosi, Harry Reid, Arlen Specter, Kathleen Sebelius, President Barak Obama and others.
Rare diseases that afflict children like the cholesterol disease Niemann Pick Type C could lead to treatments and cures for millions of people. When will anyone pay attention? Maybe this year Oprah will consider covering Addi and Cassi since the cyclodextrin we are giving Addi and Cassi not only might save them from this deadly cholesterol disease but all kills the HIV-AIDS virus!!
Twins Addison and Cassidy Hempel are fighting a disease that steals their memory, but they’re only five years old. Now their mother Chris is on a crusade to stop Niemann-Pick Disease Type C, a disease similar to Alzheimer’s.
Mom Finds Experimental Drug for Twins’ Fatal Cholesterol Condition; FDA Approves Treatment Under Compassionate Use Program
Good Morning America reports on the Food and Drug Administration’s approval of Addi and Cassi’s compassionate use Investigational New Drug Application to give them intravenous infusions of cyclodextrin, a non toxic sugar compound found in everyday food products. Cyclodextrin may have the ability to remove trapped cellular cholesterol from Addi and Cassi’s brain, liver and spleens.
San Francisco Bay Area Television station KTVU Channel 2 tells the story about how HIV/AIDS and rare childhood cholesterol disease are connected and how a promising new treatment with a sugar compound called cyclodextrin could help both deadly diseases. Our thanks to KTVU for airing this 4 minute segment. (April 1st, 2009)