Support Emma Grace's Journey

***Update*** 03/19/2025

Emma Grace will be starting the AMPS Program on Monday, March 24th!

On Monday, March 3rd Emma Grace attended her consult in the AMPS Clinic at CHOP. She received head-toe assessments from four different practitioners who all concluded that in addition to her other diagnoses, she also has Amplified Musculoskeletal Pain Syndrome (AMPS).

Next Monday Emma Grace will begin the AMPS program by participating in a variety of intensive physical, occupational and psychological therapies. This includes activities such as aerobic activity to increase cardiovascular tone, desensitization therapy, and individualized therapies for stress relief and coping. These therapies are geared toward breaking the cycle of pain and retraining the affected nerves in her body. They are very hopeful that with the completion of the AMPS program, Emma Grace will be able to function normally and participate in everyday life.

Alice and Emma Grace will stay in Philadelphia for the duration of the AMPS program, which is four weeks. The costs associated with travel, lodging and food are astounding. As an example, the total for lodging and food to stay overnight on March 2nd was $672. If you are financially able and feel led to do so, please consider making a donation toward Emma Grace’s care. Emma Grace and her family would like to thank everyone for their continued love and support. They ask that you join them in prayer for safe travels, comfort during their time away, and the success of Emma Grace's treatment.

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Emma Grace is the 15-year-old daughter of Hubert and Alice Hartless of Vesuvius, Virginia. In February 2024, after three years of suffering from pain and illness and seeing multiple specialists, Emma Grace was diagnosed with Fibrous Dysplasia and a large, inoperable brain mass that ranges from her left inner ear into the temporal lobe of her brain.

Emma Grace receives treatment from Neurosurgeons, Neurologists, and ENT specialists at both UVA and Johns Hopkins hospitals. Despite this specialty care, Emma Grace struggles every day with Migraines, Vestibular Dysfunction (dizziness and balance issues), short-term memory concerns, severe head and ear pain, nausea, and lack of appetite. Unfortunately, conservative treatment with medications and vestibular therapy has been ineffective at improving Emma Grace’s quality of life. She is homebound from school, as she is too sick to attend in person. And, in order to navigate her complex medical care, her mother, Alice had to leave her nursing job to care for Emma Grace.

In March, Emma Grace and Alice will travel to the Children’s Hospital of Philadelphia (CHOP) to receive treatment at the Center for Amplified Musculoskeletal Pain Syndrome (AMPS). This four-week, multi-disciplinary program will require that Emma Grace and Alice live in Philadelphia for the duration of the treatment. Upon arrival, Emma Grace will receive specialized testing to develop an individualized treatment plan geared toward improving her functional deficits. She will then attend the AMPS Center daily to receive a variety of therapies and treatments which will teach Emma Grace how to manage the debilitating symptoms associated with her condition. Studies have shown that children who complete the AMPS program have around an 85% increase in functional abilities, and the Hartlesses are hopeful that Emma Grace will experience the same.

As you can imagine, the travel, lodging/accommodations, and food costs associated with this program will be substantial. If you are financially able and feel led to do so, please consider making a donation toward Emma Grace’s care. Emma Grace and her family would like to thank everyone for their continued love and support. They ask that you join them in prayer for the success of her upcoming treatment.