Team Maddie

My beautiful niece Madison who is 2 years old was recently diagnosed with Hemophagocytic Lymphohistiocytosis or HLH as it's more commonly known. It's a rare disease that occurs in infants and young children. She had been battling the disease but recently had a major setback. Her doctors put her on a series of injections and steroids  and she seemed to be responding to the treatment. Three weeks later she had a setback and became very sick again.  She was admitted to Stony Brook Children's Hospital last week. Doctors found the HLH in her spine and brain and immediately began a course of chemotherapy.  Madison reacted badly to the chemo and began to have seizures.  She was put into a medically induced coma while Doctors tried to battle the seizures. While she was being treated at Stony Brook, we reached out to the Children's Hospital in Cincinnatti that has some of the worlds foremost HLH experts  on staff including a full HLH response team. After her seizures were under control, Madison was airlifted to the Cincinnatti Children's Hospital and is in the process of being evalutated and slowly brought out of the coma.

The Doctors at the Cincinnatti Children's Hospital
are going to administer an experimental drug to Madison in the hopes that it will help treat the HLH. If the experimental drug works, she will then need a Bone Marrow Transplant to replace her damaged immune system.  She has a long, tough road ahead and we are praying for her every day.

While the Cincinnatti Children's Hospital has been wonderful and insurance is covering much of the costs of the treatments, there are a large number of expenses that are not covered. 

For that reason, we are starting this fund to help assist with the costs of keeping Madison's fight going strong.

Anything you can give will be sincerely appreciated.

We are eternally grateful for all the support and love that is being sent her way.