Rally for Raphi

This is the story of a daughter, a sister, a granddaughter, a niece, a cousin, a friend…with unimaginable will and courage; her name is Raphi. She was born with Brugada Syndrome and a genetic condition of unbalanced chromosome translocation/deletion that leads to developmental delays and countless health issues. Her first six to twelve months of life was spent in the children’s hospital enduring a number of surgeries and procedures; the most notable was implanting growth plates in her skull to allow for brain growth and development.

The following years have been filled with so many more challenges, and each time Raphi continues to show her strength and determination. Can’t talk – no problem, there’s sign language for that. Blind in one eye – no problem, still one sees. Deaf in one ear – no problem, one can still listen. Only 30% heart EFR – no problem; while it makes getting around a little tougher, that’s still plenty of heart to give and receive all the love. Neck surgery, eye surgery, bones broken and reset, breathing treatments, the list goes on and on, and she’s overcome each hurdle.

Fast forward 19 years to today and she’s found her greatest challenge. The week of Jan 5, Raphi and her mom, Raph, made the 5-hour drive to Mayo Clinic in Rochester, MN, to see her team of docs for a few planned procedures and tests. Nothing out of the ordinary, but then something went terribly wrong. Suddenly Raph found herself in a consult room being asked questions she was not ready to answer, and could only ask if she needed to call her husband, Raphi’s dad, Bobby…

Since that very minute, there have been so many challenges; the most crucial when Raphi was put on ECMO / life support at the end of that week. Two weeks later, she remains in the cardiac critical care unit and the doctors continue to monitor and adjust plans on how to get her functioning under her own power again. Since Raphi’s already an anomaly; it seems that any resolution lends itself to more inexplicable complications.

At such a crucial time, it’s easy to agree that a parent would want to be nowhere else but by the side of their child. However, Raph and Bobby have another daughter at home that is not old enough to stay on her own. This requires family and sitters to be with her for extra-long shifts and overnights. Add on other unforeseen expenses, like a long term stay at a hotel near the hospital and trips back and forth from Milwaukee, WI to Rochester, MN, and a financial burden accrues very quickly.

Since Raph and Bobby are chiropractors and the only doctors at their practice, they are splitting time as best they can to continue to provide care to their patients and be with their daughters. Providing patient care has always been a top priority to Raph and Bobby, so they are grateful for the understanding and the flexibility their patients have shown during this time.

As family we try to find ways to help, but the immediate needs are quickly building beyond our reach. This doesn’t even take in to account all the potential future needs – rehabilitation, long term care, additional hotel stays for continued care or appointments, continued split and time away from their chiropractic office, home modifications to accommodate additional medical equipment, etc.

We understand that 2020 was a tough year for all, and it’s possible 2021 hasn’t started out stellar either. However, there are always reasons to press on and countless blessings in every day. It’s impossible to know the reach of just how far one happy thought, one call, one kind word can go. We hope you’ll take this opportunity to support Raphi, Bobby, Raph and their family as they continue to press on. Please know all donations will go directly to the family to cover medical expenses, additional care required, and all other related expenses.

Raphi would love to hear from you, so please feel free to post a video or note to the Rally for Raphi Facebook Page at https://www.facebook.com/Rally-for-Raphi-102097748560910