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!
Updates (7)
April 8, 2016
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!
March 8, 2016
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!
Photo Galleries (2)
Guestbook
February 10, 2016
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
January 8, 2016
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
December 1, 2015
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
