Join Frankie's Fight in Her Heart Journey to Californa!

Please join us in Frankie's Fight as she continues the battle with her rare, critical congenital heart disease and heads to California for her second open heart surgery. Donations, meals, thoughts, and prayers are needed and appreciated during this time!

Frankie and her family will be heading to California the first week in August for a heart cath and then 4-6 months later will go back for her second open heart surgery. The upcoming trip is expected to be for about a week if all goes well (though the cath does have risks), and the second trip to California for her open heart surgery will be for an extended but unknown amount of time.

Immediate needs are donations to assist with the family's journey in August to California. In whatever way you are able to assist, it is greatly appreciated and prayed for daily:

---

Frankie Evelyn was born March 2, 2022 at just 5 lbs 4 oz to Rachel and Keenan Osborne at Women's Methodist Hospital in Omaha, Nebraska. Frankie was then immediately swept up and safely transported to Children's Hospital where she stayed for the first three months of her life. When most get to recover and snuggle their newborn, Keenan and Rachel were faced with immense uncertainty and a brand new world ahead of them: life with a heart baby.

Frankie was born with a very complex and critical form of congenital heart disease (CHD) known as Tetralogy of Fallot with Pulmonary Atresia, VSD, and MAPCAS. 1 in 100 babies are born with CHD, but not all are faced with such a complex case. At just three weeks old on March 25, 2022, she underwent her first open heart surgery to unifocalize her MAPCAS, as well as received a PA Plasty and RVOT reconstruction. Her chest remained open for three weeks while she recovered in the Cardiac ICU at Children's Hospital (if you aren't familiar with heart babies and open heart surgery, when we say her chest was open, we mean OPEN and you can see her very sweet, very tiny, and very special heart beating). This was just the start of a difficult and rocky road for Frankie.

At six weeks old, she suffered from a massive stroke during a heart catheterization (cath) which extended her stay in the CICU and added to her recovery time. The stroke was caused by a clot on the RA that was placed in her heart. When babies have strokes, it is very difficult to know the long term effects of the stroke (e.g. they're not talking yet so you don't catch slurring words) BUT they can also have huge strides in recovery and how they compensate for any loss. However, they knew the stroke was severe and the impacts would reveal themselves as she gets older. Frankie's "normal" continued (and continues) to change and be a moving target.

Frankie celebrated turning two this year and meeting her, you wouldn't know her life has been consumed with needles, tubes, sickness, and endless hospital visits because of how HAPPY she is. But, you do see the things that remind you she's a heart baby and a stroke survivor: she's very pale and sometimes looks blue, she has a G button for feedings, the right side of her body has limitations from her stroke, her body is riddled with scars, and she's very small. Despite all of these impossible things, Frankie is a fighter and she is fearless, and always paired with a big smile.

As Frankie is getting older and bigger, more decisions are getting made about her next open surgery. While the team and care is excellent at Children's Hospital in Omaha, they are unsure they can accomplish everything that is needed in her next surgery and their recommendation is to go to Stanford to see Dr. Frank Hanley (who is considered the BEST surgeon for the type of surgery Frankie needs).

The future is uncertain, but there are two knowns:

Dr. Hanley and his team perform these type of surgeries weekly for families that travel from all around the United States and the world for their heart babies and kiddos to have a higher quality of life and live life to their fullest. They are the experts that can provide Frankie the care and surgeries she needs, all while being able to complete it in one surgery, where the team in Omaha thinks they'd need at least two which is why the Omaha team recommends California (the more open heart surgeries, the more risk).

Going to California brings so much hope for Frankie's future, but it also brings many financial burdens. The goal of this fundraiser is to assist Frankie and her family with the costs of traveling to California as a family of six. This includes things like gas money, airfare, food, lodging costs, and loss of income as they take time off during Frankie's heart cath and then surgery. These are the indirect costs that get forgotten but add up quickly when you're juggling day-to-day life while your little one is in the hospital fighting for their life.

For most people, life with a heart baby is an unknown world. It is a very difficult, impossible life and one you wouldn't wish on your worst enemy, but once you are exposed to this life, you realize how lucky you are to get to know these heart babies like Frankie. They are the most loving, happiest, resilient, fearless, and beautiful babies you get the opportunity to meet. Anyone who meets Frankie immediately catches her contagious smile and bubbly energy. She overflows with love.

During Frankie's journey, she is carrying with her the strength of the other heart babies that have been on her journey - some that are still fighting and some that have lost their fight.

If you are in a position to donate or assist with meals, it is greatly appreciated. If not, your prayers, positive thoughts, sharing her GoFundMe, and ALL THE HEALING energy is also greatly needed and appreciated during this time.

You can keep up with Frankie and her journey on her Facebook page managed by her mom, Rachel: Frankie's CHD Fight