Fighting 4 Phoenix (#fighting4Phoenix)

Fighting 4 Phoenix

Our daughter/granddaughter, Kyleigh (Kinsella) and her husband, Christian Arnold, are expecting baby girl #2 (named Phoenix) with a due date of 4/22/2022. Big sister Alaska was born 12/12/2020. ❤️

At their recent routine appointment on 12/10 (21 weeks pregnant), Phoenix had her anatomy scan and concerns were raised due to an enlarged heart. The OBGYN referred them to a pediatric cardiologist in Syracuse (12/22/2021) for an echocardiogram and consultation.

The pediatric cardiology team discovered that Phoenix has a rare (1 in 200,000 LIVE births, as many end in fetal demise) congenital heart condition called Ebstein Anomoly of the Tricuspid Valve. Hers is SEVERE!!! She was given a 10% chance at life, and Kyleigh and Christian decided that 10% is better than 0% and are now finding the best doctors in the US to find the one who will give Phoenix the best chance.

Crouse, Upstate, nor Strong is equipped to handle such a severe case, and nobody in NYS is either.

Their 1st choice is Mayo Clinic in Rochester, Minnesota because Dr. Dearani has devoted his career to this condition and shows a high success rate. They FINALLY got appointments for January 11th and 13th (6 in two days!)

IF Dr. Dearani takes the case, they will be moving to MN asap to get proper medical care (Phoenix will have to be monitored very closely to watch for heart failure and lack of lung development- her heart is so enlarged, her lungs may not have enough room to grow). Kyleigh also has to be closely monitored because she is also high risk.

When speaking to Mayo Clinic, they were told their NYS insurance was not accepted there and it will be all self-pay. 

The heart surgery alone is estimated at $190k. Adult Tricuspid Valve Repair . We are hoping MN Medicaid can assist once we know more as obviously they will all be moving there together.

This is not an easy time for any of us. If you can offer prayers, positive thoughts, or donations, they would be very much appreciated. Our goal is to give Phoenix the best fighting chance.

They found a trailer to rent AND Christian already found a part time job!!!! 

Thank you,

Jake & Tara Dennee and Rob & Louanne Weatherstone.

 

- If you would rather avoid Gofundme’s fees, you can choose one of the following:

-There will be a donation container at 

J & T Car Care in Jordan. Also, the manager, Kailey will be accepting checks, gas gift cards, grocery gift cards, etc.

- If you have any questions, please don’t hesitate to ask.

#fighting4phoenix ❤️