POTS has resulted in an exaggerated increase in heart rate when moving from sitting to standing. When Liam stands there is a pooling of blood in the vessels below his heart causing lightheadedness, spinning, neurological dysfunction, fatigue, flu-like symptoms, intense body pain, nausea, and vomiting. Many of these symptoms also occur with Lyme disease, making his case complicated.
Liam was an intelligent, active student-athlete, who loved to play hockey, lacrosse, and football. Since his diagnosis in January 2019, he has vomited for the past year and is no longer able to attend school regularly, or participate in sports or normal daily activities. He requires in-home nursing care, daily IV saline infusions to regulate blood pressure, sometimes daily doctor's visits and constant care. Blood pressure medications, antibiotics, and numerous other medications have not helped to control the symptoms. He has given up hope. Treatment for autoimmune/Lyme and POTS is challenging and POTS condition can be life long requiring some to become disabled. Liam is currently going through extensive antibody testing through the Mayo Clinic to determine which antibodies are attacking his autonomic nervous system, his brain and dysregulating his digestive system prohibiting him from eating sometimes for days.
Liam has a team of doctors in Boston and New York. The majority of medical care, IV's, and specialty laboratory testing are not covered by insurance. Doctors are now recommending a minimum of 6 months of IVIG infusions which are estimated to cost over $20,000 per IV, in addition to intensive IV treatment afterward. This may include IV antibiotics for Lyme which is not covered by insurance and can cost between $15,000-$30,000 depending on the duration.
IVIG infusions are one of the most important and successful therapies for people with primary immunodeficiency diseases, especially for those who are antibody deficient. The therapy is both lifesaving and lifelong, and it plays a huge role in the lives of many people with immunodeficiency diseases.
The family has exhausted personal funds and all other sources of financial support and credit. Liam's mom, Christine, is no longer able to work full-time due to supporting Liam's care. All collected donations will help fund IVIG infusions, cover Liam's extensive medical expenses, most of which are not covered by insurance.
The O'Shaughnessy family (Jim, Christine and Grace) is deeply grateful for all of the support they have received from friends and family. Any contributions are greatly appreciated.
- Janice and Alan Cangemi
- Lauren O'Shaughnessy
- Shea OBrien
Organizer and beneficiary
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