Support for the Jones-Harrington Family

On Saturday, 4/21/24, Pat, The kids and I left our vacation in Orlando a bit early to start a 23 hour journey to get Giana back to Boston to be seen at Boston Children’s Hospital.

Over the course of about 6 months prior, G had lost about 1/4 of her body weight without trying, had started developing a lot of random symptoms (all that she had been seen for, but none that seemed related to one another), and had been diagnosed with hypothyroidism and started Synthroid to hopefully start getting her thyroid issue managed. While trying to enjoy vacation in Florida, we began to realize that her tolerance to heat was worsening rapidly, her heart rate was at a consistent 130bpm, and her mobility was becoming almost non existent because of her weakening muscles, shortness of breath, and water retention in her legs and abdomen. After getting her to the emergency department at Children’s, she was almost immediately given an Echocardiogram showing that her heart was enlarged and that 2 valves in her heart weren’t functioning properly, one causing backflow into her lungs resulting in her shortness of breath, and one preventing her other organs from getting the blood that they needed in order to function properly, which was also causing “leakage” which resulted in the swelling of her lower extremities. She was admitted to the Cardiac ICU within a few hours of arriving and given a few medications to a.) help her heart pump a little bit easier to prevent it from being under so much stress, and b.) help her to get rid of some of the fluids she’s been retaining in her legs and abdomen.

As of right now, with the medication, she’s feeling better than she had been, but still not even close to normal.

The doctors are continuing her current medications to keep her comfortable while the cardiologists, endocrinologists, rheumatologists, and infectious disease specialists work together to find out what is causing her heart to swell and function improperly - a process that will likely take a few weeks of hospitalization at minimum to figure out.

Trying to wrap our heads around this whole situation has been a whirlwind to say the least - and with Pat and I both being out of work to care for the kids and switch off (along with Ric) staying at the hospital with G, while eating every meal out, just returning from a week off of work for vacation, and going through gas like it’s water (all while bills aren’t stopping for us), we have pretty much no choice but to ask for any tiny bit of financial help that we can get, as mortifying as it is to do so.

If you’re able to help at all, every little bit counts, and we absolutely can not thank you enough. If you can’t help financially, all that we ask is that you say a little prayer for our girl while she works through this painful, emotional experience and redefines her new “normal.”

Thank you so much,

The Jones-Harrington Family