They say that all it takes is one phone call, one diagnosis, one moment that will change your life… forever.
Hunter with his dad, Elliott Coon
On March 29th, Hunter was taken to the ER after experiencing a severe migraine, nausea and limited vision - symptoms he had been struggling with for a year that progressively worsened over time. The results from his CT scan identified a mass on the base of his brain and top of his spine - a brain tumor. Two more MRIs were completed, and they discovered masses of various sizes on his abdomen, lungs, kidney, spine and pancreas.
Hunter was diagnosed with Von Hippel-Lindau syndrome (VHL) - a rare hereditary disorder causing benign or malignant tumors and cysts to form in multiple organs - a diagnosis he will have for the rest of his life. The condition is so rare that it only affects 1 in 36,000 people.
Hunter was admitted into the hospital March 29th and the preparations were being made for him to have brain surgery to remove the tumor on April 4th. All in all he had 4 major surgeries within a short time:
- On April 2nd, Hunter underwent brain drain placement to relieve fluid and pressure.
- On April 3rd, Hunter had 4 major arteries that were feeding the brain tumor embolized, which cut off blood flow to the tumor. This would make the tumor easier to remove with less bleeding.
- On April 4th, Hunter had brain surgery to remove the tumor, which was a success - 98% of the tumor was removed. The tumor was benign (thank goodness).
- Hunter's surgical area got infected and began leaking fluid, and he had to have another procedure on April 18th to clean up the surgical site, which involved a fat graft from his back.
The surgery has left Hunter with bilateral leg and arm weakness, and he's currently unable to live independently, requiring full care… And he’s only 22 years old.
After many ups and downs at the hospital between illness (he somehow developed the flu, pneumonia and meningitis), complications (including a dislocated right shoulder), and several blood transfusions, Hunter finally became stable enough to be moved to rehabilitation facility on April 23rd, after spending 25 days at the hospital.
This has been a lot to process for everyone who knows Hunter and his family. Seeing a young man so full of life suddenly become unable to do the simplest tasks is unthinkable.
Hunter can’t work. He had to give up his apartment. He can’t drive. He has personal bills to cover as well as medical bills coming in, any adaptive equipment that will be needed at home to ensure his safety, follow up appointments, and possibly more tumor removals (they are monitoring the ones on his kidney right now).
The surgeon is projecting a recovery time of 6 months to a year. They are still not clear as to what abilities Hunter will regain, which is beyond overwhelming for Hunter and his family.
We are seeking assistance to help with:
- Medical bills
- Future surgeries
- Equipment expenses (the wheelchair he will need is going to cost $5000 after insurance)
- Adaptive equipment for Hunter's bathroom
- VHL Specialists
- Physical Therapy
- Occupational Therapy
- Regular "life" expenses like phone bill, credit card, car payments and insurance (with the hopes that he will be able to drive again)
It’s being asked that everyone continue to pray for Hunter, sending him love and light, strength and courage as he faces a long road ahead.
