Support Charlie's Fight Against Noonan's Syndrome

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Support Charlie's Fight Against Noonan's Syndrome

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At three months old, our sweet baby Charlie is funny, smart, and curious. Above everything else, our daughter has always been a fighter. Even before she was born, Charlie overcame cystic hygromas, beating the odds that were told by doctors. Due to my autoimmune disorder, Charlie's heart development was always a concern. We went to weekly ultrasound appointments to monitor her progress. Although abnormalities were found, her heartbeat was strong.

On August 31st, 2025, our gorgeous girl was born. The hospital knew of the concerns with her heart, so the attending pediatrician performed an echocardiogram. He said that there was a loud noise that he would associate with a particular valve needing to close, but often these kinds of cardiac issues resolved themselves within a few days.

It was our family pediatrician who was the first to raise concern. After monitoring Charlie's heart over several visits, she decided it was worth contacting a pediatric cardiologist to take a closer look. She was able to get us an appointment for the next day, which we will always be grateful for. During her first appointment, the cardiologist identified that Charlie had pulmonary valve stenosis, hypertrophic cardiomyopathy, and two holes in the walls of her heart. He described the possible surgeries that may need to be performed and explained that we would want to follow up with him frequently to monitor her.

At the next visit, her heart remained stable. However, it bothered our cardiologist that he didn't have a cause for Charlie's congenital heart disease. After speaking with his colleagues, he shared that there was a possibility that Charlie had Noonan's Syndrome, a genetic disorder which frequently presented with the exact heart conditions that she suffers from. We were referred to their Genetics Counselor who walked us through the process of testing and possible services she could receive if it ever became necessary.

On November 24th, 2025, one day after Charlie turned 3 months old, we received the official Noonan's syndrome diagnosis. We were presented with medication options for her heart as well as methods of helping her gain weight, which we've had an issue with since she was born.

We feel so lucky to have such an incredible team taking care of Charlie. Because of them, we were able to get her diagnosed early. However, along with amazing medical care comes medical bills. Specialist appointment costs, extra formula, medications, testing, and travel have all begun to add up. It has become difficult to keep up with medical costs in addition to the regular costs of raising a baby. We are asking for assistance to continue getting Charlie the care she needs.

Organizer

Tia Daniels
Organizer
Richmond, VA
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