Emmie B’s battle with heart disease

Hi! My name is Monica and I am creating this fundraiser for my granddaughter Emmie and her family. Emmie turned 2 in June and she is one of my 2 granddaughters.

During what was supposed to be a routine follow up with one of her specialists, Gina (mom) was advised to take Emmie directly to the ER as her heart rate was extremely high. After a chest X-ray and an echocardiogram it was revealed that Emmie was in heart failure, she was diagnosed with dilated cardiomyopathy, a disease of the heart muscles. Emmie’s heart is not strong enough to pump out as much blood as it needs and as a result her left ventricle is enlarged, adding more strain on her heart. We are unsure how this happened, and often times a cause it not found. There is no cure for this disease, and the hard truth is that many of the outcomes of this disease are terrifying.

Medical history:

This was not the start of Emmie’s medical journey though. For the past year Emmie has been to Syracuse and Rochester to the neurologist, geneticist, pulmonologist, speech pathologist, gastroenterologist, ENT, ophthalmologist, developmental and behavioral specialists, cardiologist; as well as frequent visits to the ER for pneumonia, RSV, and her 4 times a week early intervention services. Emmie has struggled to maintain good health for over a year as she continued to get back to back to back viral infections that caused her to have high fevers, lose weight, vomit and aspirate. In June of 2023, Emmie had a triple scope with gastro, ent and pulmonology- they wanted to rule out an esophageal cleft along with other potential concerns. The results of the scope were that Emmie has larger than normal adenoids, so they were able to “shave” them down which had seemingly resolved her gagging/choking and feeding problems all together! She had mucous build up in her ears that were impacting her hearing and her speech, so she now has tubes placed, and she had an infection in her lower left lung which she presented no symptoms of. After this procedure Emmie has never been better! She is healthy! She is growing, she was excelling in all of her early intervention services. Then September 7, 2023 Emmie was diagnosed with dilated cardiomyopathy. She is presenting with no symptoms at this time but her heart is struggling.

The family has taken a lot of time off of work this past year to attend all of these appointments and in March 2023, Gina utilized PFL 2 days a week to be able to attend all of Emmie’s weekly early intervention services and medical appointments. That time off is coming to an end and she will have to take unpaid leave for all future appointments.

Many people have been asking,”how can we help” and this is one way that would help so incredibly much for Emmie and her family. This fund will help with groceries, gas, parking and food expenses for all of her appointments that are to follow this life changing diagnosis, any expenses not covered by insurance as well as maintaining bills as they continue to have to take unpaid time off of work to ensure Emmie attends all of her necessary appointments.

On behalf of the entire family we thank you all so much for the support you continue to show us. If you are unable to donate that’s ok! Please give this page a share, that can help us bring awareness to this disease and Emmie’s battle with it.

You can follow Emmie’s heart journey on Instagram!

https://instagram.com/emmiesheartjourney?igshid=YTQwZjQ0NmI0OA==