Getting Ava Maria IVIG

Ava Maria Conerty is the daughter of Jim and Sheri Conerty. I am Ava's aunt and Emma is Ava's big sister. Ava has an amazing support system, to include: her big sister, Brianna and her husband Jay; big brothers J.R. and Matthew; little brother Giovanni; and Emma's husband Andrew. The family is also surrounded by a loving, caring and active support system. We come to you today, humbly, with a request. I'd like to start first with Ava's story.

In December 2020, Ava was diagnosed with Covid. She was six years old at the time. Her first 24 hours were rough, but she held on for 10 days in quarantine. Jim and Sheri noticed she wasn’t quite the same after Covid but chalked it up to some behavioral issues. In May 2021, Ava started experiencing sickness and endured multiple rounds of antibiotics. Her health began to decline. Jim and Sheri sought answers with their local pediatrician. Additionally, Ava was seen by infectious disease doctors at Nationwide Columbus in July 2021. Ava was suffering with extreme fatigue, daily headaches, stomachaches, on-and-off fevers and weight loss. She also struggled with multiple diagnoses of strep throat. Treatment was also sought at the Cleveland Clinic. Ava turned seven on August 8, 2021. In September 2021, Jim and Sheri traveled with Ava to C.S. Mott Children's Hospital at the University of Michigan. The search continued after more than four months of debilitating illness. After the visit, Ava was diagnosed with Long-Covid. Her continued medical struggles included fatigue, headaches, stomachaches, sore throat, body aches, fevers, anxiety, depression and food tasting "bad." Ava stopped attending school on a daily basis. During this time, and this is the most difficult part, Ava also struggled with neurological and psychiatric effects of the illness.

Ava continues to struggle. She cries and does not understand why. She is sad and does not understand why. She lashes out. She has become physically aggressive in the home. She screams, has hit her head against the wall and caused damage within the home.

Sheri and Jim conducted a lot of independent research to educate themselves on potential treatments for Ava. Was something missed? Sheri learned about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). PANDAS causes inflammation in the brain. Sheri located a doctor in Cleveland, we will call him Dr. K, who has a history of treating children with PANDAS. I attended the first appointment with Sheri and Ava on October 12, 2021. The office visit was lengthy. Sheri is amazing and had all information about Ava's struggles documented. Dr. K diagnosed Ava with PANDAS. The diagnosis for PANDAS is a "rule out" every other illness type of diagnosis. Unfortunately, not all doctors "believe" in the diagnosis and want to treat the illness with mental health medication. Dr. K was one of the most amazing doctors I've ever met. During the office visit, Ava had an "episode" and Dr. K handled it with grace. Clearly, this behavior was not new to him. He shared some behaviors experienced by other kids with PANDAS and it broke my heart. Dr. K also diagnosed Ava with long-haulers Covid. A plan was put in place to treat one issue at a time and we left Cleveland feeling hopeful.

In late October, after 10 days of antibiotics, the medication was stopped. Ava did not sleep for several nights in a row. She was agitated. Additional bloodwork revealed she was anemic and had mononucleosis. Ava stopped attending school. Her anxiety became so intense that she would not leave the house. Ava was sensitive to all sensory stimulation and she became quickly agitated when over-stimulated. She was also chewing on her shirt and blanket uncontrollably. In early November, Ava began eating again and gaining weight. On November 8, 2021, Ava, Sheri and Emma traveled to see Dr. K for an update. Ava gained weight; however, there were no significant changes otherwise. Ava continued to target her aggression towards Sheri. As an aunt and sister-in-law, this has been a big struggle for me to witness. How do I tell a seven year old that she's being irrational and aggressive, when she does not even understand what she is going through. Late November saw few changes. Ava had a very difficult evening on Thanksgiving and displayed aggression towards Sheri. Her episode lasted two hours.

On November 30, 2021, Sheri, Ava and I traveled to see Dr. K. Her episodes of aggression continued to increase. The plan was put in motion to treat Ava with Intravenous Immunoglobulin (IVIG) with Dr. K. He's seen this treatment work with other PANDAS kids, so we are hopeful. As of January 21, 2022, Ava has been diagnosed with an autoimmune disease, anxiety, ADHD, obsessive compulsive disorder and PANDAS. IVIG treatment is considered "off label" and there are no guarantees that the treatment will be effective; however, we believe in Dr. K and we believe in Ava. At this point, nothing else has proven successful. In the midst of all this, my brother is close to entering his fourth year battling brain cancer. Throughout everything, my family has never stopped believing in the power of prayer and the Word of God.

A request for continued prayers for Ava remains the priority for Jim and Sheri. However, due to Ava’s recent decline, Jim and Sheri have decided to move forward with IVIG. This is not a decision entered into lightly by Jim and Sheri. How can you help? Insurance recently denied IVIG treatment for Ava, which, as previously stated, has proven to be successful in the treatment of PANDAS. Ava is scheduled for her first round of IVIG on January 27th and January 28th. Brianna is flying in from Delaware to attend the infusions with Sheri. The cost of the treatment is at least $10,000. The purpose of this Go Fund Me is to raise funds to help cover the cost of treatment and any additional needs that arise during this time. If you cannot donate, please consider saying a prayer for my family and specifically, for the treatment to be effective. It may take a couple months before the IVIG treatment takes effect. In the meantime, her health may decline and the episodes may get worse before they get better. We remain hopeful!!