Support Joshua's Fight- Rare Disease- Familial Dysautonomia

GoFundMe Request for Assistance

Patient: Joshua J.S. Perez

Mayo Clinic - Rochester, MN

Rare Disease - Medical Funds Request

UPDATE-

INSURANCE HAS DENIED THE APPEALS, WE WILL FILE A GREIVANCE WHEN WE RETURN HOME. WE HAVE APPLIED FOR FINANCIAL ASSISTANCE WITH MAYO CLINIC WHICH THEY SAID WILL TAKE ABOUT 45 TO 60 DAYS TO DETERMINE WHAT AND IF, ANYTHING IS AVAILABLE For HIM. I have spoken to the Mayo Doctor as well as our Primary carr team, they have decided we can do MANY of the tests in Florida, and possibly see the mayo doctors there if insurance will allow them via telehealth or in Jacksonville as they are out of network

The mayo doctors may do peer to peer consultations from Mayo Florida and Msyo MN. Once we get the go ahead and funds to see doctors at Mayo Clinic Mn, we will come back up for the review of alll tests and devise a treatment plan.

We leave Minnesota, Tuesday to return home to complete the tests that are available there.

WE HAVE UPDATED THE AMOUNT WE NEED TO RAISE TO HAVE THE TESTING DONE AT HOME AND SEE THE REQUIRED SPECIALISTS THERE.

PLEASE CONTINUE TO SHARE THIS POST, AS HE ONLY IS ABLE TO WORK A FEW DAYS PER MONTH AND THERE IS A TRUE NEED FOR HELP. THANKS TO ALL THAT HAVE HELPED FINANCIALLY, AS WELL AS SHARED OUR POSTS.

PLEASE SHARE AGAIN IF YOU CAN, AS SOME PEOPLE DONT SEE THEIR SOCIAL MEDIA EACH DAY. GOD BLESS YOU ALL!

REASON FUNDS NEEDED:

Joshua was born with a rare and potentially life-threatening condition, Familial Dysautonomia, which has deteriorated over his lifetime. Despite having received extensive medical care, myriad providers have concurred that his condition would best be addressed by a specialized team of providers at a research hospital who treat Familial Dysautonomia.

As his mother, I intimately understand the challenges Josh endures, as I, too, suffer from this condition. Having been dismissed and labeled a hypochondriac for many years until my diagnosis, I made a vow to GOD that I would not allow him to endure the same.

During pregnancy with Josh, I was put on many months of bed rest to reduce the risk of miscarriage. In the months following his birth, Josh developed digestive and cardiac, among other issues, which were dismissed by medical providers as transient anomalies.

These purported anomalies were anything but transient, continuing as he grew into a toddler and then a young child. The ensuing gaslighting by a litany of medical providers - who refused to take seriously the persistent and worsening symptoms - nearly cost Josh his life. Collapsing during playtime, around age seven, he stopped breathing – we now know his autonomic system did not allow his body to breathe automatically – and he was, quite literally, dying. Emergency personnel confirmed Josh was, in fact, at death’s door, due to lack of oxygen. Thankfully, they were able to revive him. This was just the first of many frightening episodes for which doctors had no explanation.

After many fearful years of unexplained symptoms and similar episodes, Joshua was finally diagnosed with Familial Dysautonomia at age sixteen. On the verge of death from another fainting episode, he was transported by EMS first to UF Shands in Gainesville and later transferred to UF Health in Jacksonville, Florida, where we were blessed by the tenacity of physicians who were finally able to determine what was wrong. He was fitted for a pacemaker to regulate his cardiac function and breathing; this was indeed a blessing, as we were told he would likely not live to see his teenage years.

Although diagnosis and treatment have helped to a degree, Josh continues to endure daily, life-altering challenges. Now aged 30 and still fighting, his condition prevents him from working full time and he has been denied efforts to obtain much-needed disability assistance. When we were accepted at Mayo Clinic in Rochester, Minnesota, a research facility renowned for their cutting-edge study into and treatment of Familial Dysautonomia, we felt we’d reached the pinnacle of available care - we were finally going to get the help he so desperately needs.

Yet another challenge awaited, unfortunately. Joshua and I are currently in Minnesota, awaiting an appeal with his insurance provider. Prior to our trip, we were advised that our visit would be covered. However, after the first appointment, we received a call from Mayo Clinic advising us that insurance would not be paying the bill as indicated in the prior insurance authorization and estimate, and that we must pay $1,400 – just for the first visit – before continuing care. There are currently twenty-six tests and appointments pending.

We carefully chose his specific insurance plan to provide the care Josh needs – only to be denied when we finally have the opportunity to receive the excellent care for which he has been waiting since he was a small child.

We have appealed the denial and have applied for Mayo Financial Assistance; however, if approved, funds will not be disbursed until after treatment is completed. In the interim, we must provide a deposit of $26,133 to initiate care (see attached).

Our wonderful doctors in Florida - Dr. Patel, Lindsay Piet, ARNP, and their staff - are assisting in seeking insurance approval. Meanwhile, we have been in Minnesota for nine days with no progress, wondering if we will be able to find the resources to help us.

Rarely do we ask for help for ourselves; we try to be a blessing and help others – and find it difficult to ask others for anything.

A donation of even $1 is helpful. Please know that we appreciate your love and sacrifice in blessing us so we can bless others. Any unused funds will be returned to their donors.

Thank you for your help and sharing! May God bless each and every one of you!

Sincerely,

Joshua's Mother

Alice Perez