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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
HaleighsHeroes@gmail.com
We spent Monday and Tuesday of this past week at the Children's Hospital of Philadelphia getting her re-evaluated and having a checkup. As of now she has been labeled as moderately disabled on a good day. They are hoping to have her in the hospital by July.
Thank you for your continued support!
Well folks... we go back to Children's Hospital of Philly at the beginning of April for another visit and see what our options are at this point. Please share this site with friends....maybe now that tax time is coming around, this can catch fire and people will want to donate a little bit! Every little bit helps... and every bit goes towards cost for her treatment!
Hello, Haleigh's Heroes!
I just wanted to touch base to let you know I haven't forgotten you. I wish there was more you to report at this stage but we are just in the "trying to raise money phase," still. Fighting the good fight and plugging along. Please help spread the word about my daughter and her cause by sharing this page on Twitter, on Facebook and wherever else you can think of. Thank you, and Happy Holidays!
Leigh
To understand what Haleigh faces each day and to learn about Amplified Musculoskeletal Pain Syndrome, please click on the diagram below found under Photo Albums.
(**video inside**)
Again... I'm sorry for my frustrated voice. This is before we had a diagnosis and I was desperate to get this video out there, in ANY way, to ANYONE, who might be able to help! We now have a diagnosis... PLEASE help us afford treatment! NO ONE should have to live like this!!! And, again, this isn't even one of our worst days.
(**different video inside**)
Please excuse my voice... this is a video I took during a flare up. This is NOT the worst kind of flare. During this, there's no way I'd video her.
We are SO very excited to be a part of HelpHopeLive now!
Now, not only can you give and feel GREAT about helping a child finally get the treatment she needs in order to live a painfree life, but you can help yourself, too, because your donation is now tax deductible! It's a WIN- WIN for everyone. <3
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Leigh and Haleigh,
Hang in there...eventually you will get to C.H.O.P. Our son spent a month in C.H.O.P. many years ago when he was 14, and the personnel and the care he got was exceptional! It is such a great place, with caring nurses and doctors. I know it seems like the pain won't end, but you will get the treatment you need and live a long and wonderful life painfree! We will keep you and your family in our prayers.
Lynn and Jim Burkhardt
Leigh,
My heart goes out to Haleigh and her family. I understand being a single mother can be challenging, especially when your children are dealing with any type of illness. I believe Haleigh will receive the treatment she needs with faith, prayer, and a wonderful support group. There is hope and it starts here. I challenge not only local residents of Stafford and neighboring counties in Virginia but everyone across this great nation by issuing a call to action; not only could your donation for Haleigh give a young girl hope for a better future, it could change her life. Be a game changer, make a donation. I am honored to support, stand and fight with Haleigh's Heroes.
Brenda Billington
I am a Respiratory Therapist and for a long time I have had to deal with Chronic Pain. As an adult it is difficult and most times I have to just push through or ignore. I am also a single mother of an 11 year old girl that I would do anything for especially if she was sick. I am praying for total healing and restoration. Also for your mother I don't know you but I can only imagine, keep the faith. God can and does make miracles happen. Aloha nui loa!
Mindi-RT in Northern VA
Hang in there Haleigh! Keep believing the treatment you need will heal you and give you endless pain free days and before you know it you'll be at C.H.O.P.'s making new friends and learning how to control the pain
Tracey Goodnough
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Haleigh M
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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