Hi, I'm Cezanne Brianas, Ryan Cocolin's sister. I'm starting this GoFundMe to help with the cost of living across the country to get Nathaniel the medical care he needs.
Nathaniel was born 9/6/2019 with a known heart defect called Tetralogy of Fallot. He was born sicker than expected with more complicated anatomy than expected. He's been described as "one in a million". The initial expectation was a couple of open heart surgeries in the first year of life and things would be fine. But, Nathaniel spent his first 3.5 months of life in the Cardiac ICU and had one open heart surgery (emergently) at 3 weeks old. He went home with a feeding tube, many medications, and oxygen with the goal to feed and grow. He did just that!
He was moving toward his second open heart surgery at Children's Hospital in DC, but had a major set back in May 2020. Ryan and Jess then decided to transition his care to Stanford Children's Hospital (Lucile Packard Children's Hospital) in Palo Alto, CA. At this hospital, there are surgeons who specialize in the way Nathaniel's body has compensated for his heart defect. They said yes to taking Nathaniel as a patient, and he was scheduled for open heart surgery on Oct 9, 2020.
Ryan, Jess, and Nathaniel flew to Palo Alto on 10/3/2020 and since then Nathaniel has
been met with many challenges and changes in plan. Nathaniel has been in patient at the hospital since 10/6/2020. He's had two open heart surgeries and is going for his third as I type this. He's been on ECMO (think heart/lung bypass) and then a VAD and now BiVAD being placed today. I think of it as an external heart assist. Nathaniel has been intubated on a ventilator since 10/28.
The latest is the BiVAD and could be a possible bridge to recovery or possible bridge to heart transplant. His plan does change often and it's day to day. Here’s a recent picture:
Ryan and Jess are living in the Ronald McDonald House and the hospital. If you know Ryan and Jess, you know they planned financially for this. But, the time out there is extending way beyond expected and if Nathaniel receives a heart transplant, the time line could extend a year. Recovery time is at least 6 months even without a heart transplant. Ryan and Jess will have to fly back and forth for work at some point. If there's anyway you can help support them and relieve some of the financial burden of time off work, flying back and forth, possibly some medical bills, etc, they would greatly appreciate it.
Thank you and God Bless,
This is who we are fighting for! We love you Nathaniel!!
- Ann Hadrava
- OLIVER WONG
- Rob Bouknight
Organizer and beneficiary
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