I am creating this gofundme page for my amazing friends Joe, Becca, Audrey and JR. If you are able to donate, anything will help. If you can't help with a monetary donation, prayers, positive vibes and extra love sent their way helps too.
We are just trying to help them out with the extra medical expenses, supplementing Becca's income and any extra time off Joe would need to be here for his family.
The short/friend version is that during her pregnancy, Becca found out the little boy she was carrying was going to have a heart defect. They were informed that they wouldn't know the severity of this defect until little JR was born. On November 12, 2020 a beautiful JR made his way into the world. Below is what Becca has posted via Caring Bridge on Jr's updates since his birth.
11/13/20 JRs official diagnosis is Hypoplastic Right Heart Syndrome with Pulmonary Stenosis. This means the oxygenated blood is not getting to the rest of his body. He has 2 umbilical IVs to keep his PDA Valve open which then pumps the oxygenated blood to the rest of his body.
Yesterday 11/16 JR went in for a CT of the heart to see if they could see his coronary arteries. He also received another Echo. Neither the CT or the Echo was able to show his Right coronary artery. Next step was to have a Heart Catherization at 12:30 today. Before the Cath we were able to get some quality snuggle time in with JR and love up on him! We also had the Chaplin come in to pray over us and JR. The Heart Catherization ended up confirming what we were told all along. JR does not have a Right Coronary Artery. With that being said we were advised to start the process of getting him on to the Heart Transplant List. There are still a few other options on the table that the CICU team will be going over the next few days to determine what exactly will be the very best plan for JR. As of right now JR is doing amazing, his blood flow is great, all other organs are fully functioning. And he is incredibly strong and a fighter!
We greatly appreciate all the love and prayers and support from everyone!!
11/20/20 Today has been an absolutely amazing for JR!! We started the morning off by finally after a week getting off his Breathing tube! Which means we get to see so much more of his beautiful face and enjoy extra snuggles! They will continue to wean him off the nasal cannula through out the night and should be “tube”free by the end of the weekend. Not only did we have that huge step today JR also started oral feedings! The speech therapist said he was doing well enough and strong enough for feeds and so far is taking them like a champ. He is also a huge fan of his Paci and his hands.
Next big thing is that we have begun is the evaluation process with the transplant team. Joe and I should be done with our part start of next week and JR has to get a bunch of blood draws that will verify that he does indeed qualify for a transplant. After the eval is done we will have a few more steps and then JR will be listed on the transplant list and his status will be a 1a which is immediate need due to him being on continuous prostaglandins.
We ask for all the continued prayers with hope that our little warrior keeps surprising us daily with his strength and that he only continues to get stronger!
Joe, Becca, Audrie and JR
I am attaching their Caring Bridge link for more continuous updates.
Thank you for taking the time to read JR's story and for sending all the prayers/vibes/love/help to the DeGaro Family in their time of need.
- Jessica Gulig
- Jaime Offutt
- Stephanie Hatch
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