Saturday, October 1, 2016

CNN Covers How California Health Care Budget Cuts Threaten Life of Little Girl Suffering From Deadly Cholesterol Disease

August 5, 2009 by  
Filed under Health Care Policy, Videos

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.”

Article Source

Share this:
  • Print
  • Digg
  • del.icio.us
  • Facebook
  • Google Bookmarks
  • Diigo
  • email
  • PDF
  • Twitter
  • Yahoo! Bookmarks

Comments

56 Responses to “CNN Covers How California Health Care Budget Cuts Threaten Life of Little Girl Suffering From Deadly Cholesterol Disease”
  1. Good day I am so excited I found your web site, I really found you by accident, while
    I was browsing on Google for something else, Regardless I am here now and would just like
    to say cheers for a remarkable post and a all round thrilling
    blog (I also love the theme/design), I don’t have time to look over it
    all at the moment but I have bookmarked it and also included your RSS feeds, so when I have time I will be back to read much more, Please do keep up the great
    job.

  2. Superb site you have here but I was wanting to know if you knew of any discussion boards that cover the same topics
    talked about in this article? I’d really love to be a part of online community where I can get feed-back from other knowledgeable individuals that share the
    same interest. If you have any suggestions, please let me know.
    Kudos!

  3. I am really loving the theme/design of your blog.
    Do you ever run into any internet browser compatibility problems?
    A number of my blog readers have complained about my website not operating
    correctly in Explorer but looks great in Opera. Do you have any recommendations to help fix this problem?

  4. arts says:

    Hey there! This post couldn’t be written any better!

    Reading this post reminds me of my old room mate! He always kept talking about this.
    I will forward this post to him. Fairly certain he will have a good read.
    Thank you for sharing!

  5. An internal quick-sleeved caftan, was usually secured with an embroidered
    sash or jeweled belt, while the outer caftan may have slits at the shoulder by which the wearer’s arms had been thrust to show
    the sleeves (generally with detachable expansions)
    of the interior caftan to show off the contrasting fabrics of
    the garments.

Speak Your Mind

Tell us what you're thinking...
and oh, if you want a pic to show with your comment, go get a gravatar!

CommentLuv Enabled