Haleigh M

Help Haleigh Find Hope

As you may know, my beautiful 12-year-old daughter, Haleigh, has suffered for the last four years with severe and debilitating chronic pain. Finally, this summer, her medical team was able to put a name to her pain. She has what is called amplified musculoskeletal pain syndrome (AMPS). Due to a nerve circuit misfire in her legs, there are many days were Haleigh is completely rendered unable to move or walk because of the excruciating pain in her legs. This is a child who didn’t even cry from a break in her arm with a total separation, so when she cries and sobs, it’s the real deal and it’s bad. I am now in a desperate battle with insurance to get her treatment.

Haleigh is trying to be treated at The Children’s Hospital of Philadelphia (CHOP) for long-term treatment. She was supposed to be admitted on October 26th, but three days before departure, insurance denied her. Over the past four years, Haleigh has seen 20+ specialists in three states and DC. Johns Hopkins referred her to CHOP when they were unable to determine a course of treatment. In spite of those numbers, we must now “prove” that no one else can help her and this is our last option. Our first appeal was denied because Haleigh does not have a “terminal diagnosis.” Because it is not a terminal diagnosis, insurance considers the program “elective,” and will not cover it. To pay out-of-pocket will cost $160,000! The good news is that we recently found out that if we are self pay, with cash, they will reduce the costs to $85,000!

The program that Haleigh needs will be intense, will be painful, and will not be fun. But, this treatment is needed to get her life back. Imagine an otherwise healthy 12 year-old girl, whose mother has to help her dress somedays, help her with her bathroom needs. She’s missed an astounding amount of school but remains a straight A student. She’s missed more of her dance classes than she’s made, and besides basketball, dancing is her passion. Life is passing her by as she is bedbound many days dealing with the pain. Haleigh will be in intense physical therapy/occupational therapy for up to 10 hours a day along with art and music therapy and conditioning. The goal is to “burn out” the incorrect pathways and allow the true nerve circuit to come into effect.

Even if insurance ends up covering this, the out-of-pocket costs will be high for a number of reasons: the program is open-ended and she will stay until she is “fixed.” The family is not allowed to stay with her. We will be able to see her for six hours on the weekend days and a couple hours at night throughout the week. Philadelphia is about four hours away from the family, so, needless to say, traveling back and forth to Philadelphia, lodging, food, and medical bills will all be quite expensive.

To help with the financial burden of Haleigh’s uninsured expenses, a fundraising campaign in her honor has been established with HelpHOPELive, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible, are held by HelpHOPELive in the South-Atlantic Catastrophic Illness Fund, and are administered by HelpHOPELive for illness-related expenses only. Please, consider an end-of-year tax deductible donation.

For credit card contributions, please click the yellow Donate Now button.

I thought those four years that she suffered without a diagnosis made me feel so helpless in making her feel better. I’ve learned that it’s even more horrible knowing a diagnosis and that there’s a treatment, but, having to tell my 12-year-old that it’s currently out of reach for us, so she must continue to suffer. Thank you for any support you can give!

With sincere gratitude,
Leigh Haverstick (Haleigh’s mom)
540.907.2736
[email protected]