Financial hardship caused by medical costs

As people who are used to just working harder in order to get through difficult situations on our own, it is out of our comfort zone to ask for help, but as we anticipate $1,000/month of unexpected medical expenses (medications, copays for frequent lab and specialist appointments), we have decided to share our story.

This fall, after the sudden loss of Jeff's dad, we learned that our son Ezra has a genetic disorder called Cystinosis that causes his cells to deposit crystals in his corneas and organs, primarily damaging his kidneys - he also has Chronic Kidney Disease which is a lifelong illness that will likely eventually result in the need for dialysis and kidney transplants over the course of his life.

Although Ezra appears to be a healthy 7 year old, at the time of diagnosis in early December we learned that his kidneys are damaged and are functioning at 50%. They are not absorbing the nutrients that his body needs. He also has crystal build up in his corneas that has to be managed by medication.

Ezra has been prescribed 4 medications so far (one which must be given every 6 hours, including overnight) and must have regular blood tests and appointments to monitor his health. We have to fail the main medication, Cystagon, in order to be approved for a more expensive, yet more well tolerated twice daily medication called Procysbi.

On December 19, we also learned that Jonah has the same symptoms of Cystinosis - crystals in his corneas. Jonah will undergo the same diagnostic procedures and likely the same medication regimen. On top of this, due to stress, Jeff has suffered a flare of Diverticulitis. Elise has been unable to source furniture for her furniture business, which is important in covering the lease of her brick and mortar space and Jeff has not been able to lift furniture with her. Any bit of help is much appreciated as we try to weather this difficult time while caring for our children.

Crystals in Ezra's eyes