Jewel's health continued to decline; she gained a large amount of weight, suffered from extreme behavioral issues, and her sleep patterns drastically changed.
The family was then referred to The Janet Weiss Children's Unit at Geisinger's Hospital in Danville, PA. Jewel has spent several weeks at Geisinger's undergoing a multitude of testing, including hundreds of blood draws, scans, MRI's, and a spinal tap.
Doctor's still remain unsure of a final diagnosis for Jewel, but are leaning towards a very rare disease called ROHHAD. Only 75 people worldwide are known to have this disease. Doctors are also investigating the possibility of an auto-immune disease. ROHHAD is referred to as Rapid-onset Obesity Dyfunction, Hypoventilation, and Autonomic Dysregulation. ROHHAD is a life threating disease affecting the nervous system such as inability to regulate heart rate, body temperature, pupil response, and many other areas.
Due to the fact Jewel has not had a final diagnosis, the family is continuing to travel and research to find answers. Jewel is currently admitted to Janet Weiss Unite in hopes of finding treatments to alleviate her symptoms. Her parents have made substantial sacrifices in an effort to get her in front of the right medical team.
Any donations will be used in the continued efforts to find some answers for this little girl.
More importantly, please continue to pray for Jewel.
- Kathy Bell
- Ryan & Jessica Liddle
- Tammy Shaffer
- Tara Halpin
Organizer and beneficiary
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