Maceo and His Journey to a Heart Transplant

Dear Friends,

Over the last few months, we have been handed one setback after another, and we are trying to stay strong for our son Maceo who is so close to receiving the heart and liver transplant that we have been waiting for.

A few months ago, my husband switched jobs, and even though we have the same insurance (Blue Cross PPO), the fact that there is now a union liaison means that most of our expenses have been denied or not reviewed.

A few months ago, we were told that Maceo would be listed again as a status 1b as he was starting to become symptomatic again. Our medical team exhausted every avenue to buy Maceo more time and to help him feel better as he waits. The medication is unfortunately not enough and we need to continue with listing him again. But because of the careless and heartless actions of the insurance liaison, our medical transport was denied, causing Maceo to not be listed as he might not be able to arrive in time. The window of time is typically 4 hours and we are 7 hours away from the hospital. We are getting the liaison to give us proof of denial from the insurance company so that Medical and CCS will kick in. He then can return to the list, but they have avoided us at every step.

Currently, we are paying endless expenses out of pocket that pertain to travel and his health, looking for lawyers to help us appeal, and trying to be present with our kids the best we can, and we could use some help!

The funds from this campaign will cover medical expenses, living expenses in two locations, and if we can’t get this situation fixed, either hire a lawyer or put down money to secure private medical transport and get Maceo back on the list.

Thank you so much for stopping by and helping our family! I know money is tight for everyone, but we hope you can give a little and share this and send prayers our way!

If this is your first time here, let me share a little about our son Maceo. Maceo was born with HRHS, which is a congenital heart defect. He’s had several open heart surgeries. Maceo was doing well until he suddenly developed Protein Losing Enteropathy. This has made him so weak, and it’s also started a clock for him to get his heart transplant, as prolonged PLE can further damage his other organs. Due to only having half of the heart his heart has not been able to sufficiently supply his other organs with the proper blood flow they need to survive. Due to only having a single ventricle his heart just can not keep up with what it needs to do and this has caused him to have not only liver issues but kidney disease (stage 3). We are needing to proceed fast now as we will not put him through a 3-organtransplant. We are running against the clock and if any of his organs get worse he can miss the window of opportunity to transplant at all.

Maceo was born with HRHS which is a congenital heart defect. He has a single ventricle which lead him to the three stage open heart surgery (he had a few detours along this path and had several more surgeries) that helps treat the condition. Maceo had a very rocky course and has an extensive medical history. The last surgery is named the Fontan. With this surgery PLE is a rare but real risk. PLE for maceo came on sudden and presented with every side effect it has. The good in this is that during his admission we found that his kidneys and liver have not gotten worse and this makes the road to transplant (if that is where we need to be) much easier. Again, this can suddenly change as his condition can. definitely has come a long way and up until recently he has had some very good years. To see him climb mountains and to be able to do a lot of things he once was told he wouldn’t be able to is a miracle. He is older now and is fully aware of the sudden changes he’s experiencing physically. He’s tired, he’s swollen, he has decreased physical endurance and he overall feels weak. None of this stops him from smiling and trying to enjoy each day. He never complains and he just says he’s ready to do whatever it takes to feel better. We will do all we can to ensure that we find the best treatment plan that will give him the best quality of life.

You can also donate via zelle or venmo:

Zelle: 6262054161

Venmo: Monique-Esparza-1