Help the Silva Family with Medical Expenses

Hi, I'm Nikki and on behalf of the Aldersgate United Methodist Community we're trying to raise funds for Emily and Gabriel's medical expenses.

Gabriel, the middle child of Ramon and Emily Silva of Fort Wayne, Indiana, was diagnosed with Crohn’s in April 2022. This is an inflammatory bowel disease which is chronic. There is no cure. He will receive treatment for the rest of his life. He receives infusions in Carmel, Indiana, every 8 weeks. Ramon takes a day off every 8 weeks to get him there, forgoing a day of pay using FMLA to cover him. Without a day of pay and gas costs them around $340. They have tried to move him to the infusion center at Lutheran Hospital in Fort Wayne, but their insurance will not allow it. Thankfully, they cover his medications, doctor visits, and routine lab work. Once a year he goes to Indianapolis, Indiana for a colonoscopy until the doctor feels he’s okay to go longer without one. This requires another day off from work. Thankfully, Emily can take him to see his GI doctor when the Doctor travels to Fort Wayne to a clinic site once a month.

Emily is mom to Caleb, Gabriel, and Isabella and home schools the children. She has a chronic eye disease, severe meibomian gland dysfunction. She is thankful to have found a doctor that could properly diagnose her. Her eye problems started August 2021. She didn’t find her doctor until November 2022. Unfortunately, there isn’t a quick fix for her problems. There is no cure.

Her doctor is the only doctor in the world who treats these patients. Unfortunately, Emily lives in Fort Wayne and Dr. Steven Maskin operates in Tampa, Florida. Insurance does not cover the medical costs as the treatment is considered experimental.

She also suffers from Severe Aqueous Tear Deficiency, which means her lacrimal glands are at reduced production. The combination of the two types of glands not working properly makes her symptoms much worse, requiring more frequent visits with her doctor. She has not been able to get a positive diagnosis by laboratory testing with her rheumatologist for any known autoimmune diseases. As of right now she has no known cause for her problems.

Her doctor has been working hard to get her to a level of comfort. She has not been able to reach that level yet. He has recommended a series of lacrimal gland injections to promote healing to help with her Aqueous Tear Deficiency. She is the second patient he’s treated with these injections. It is a series of four treatments one month apart.

He is also continuing to help with her meibomian gland dysfunction. Her last visit showed that the stem cells in her glands are still not healing, they look the same as they did in November. He has put her back on steroids and will reevaluate them in August.

They expected to be out of the woods after her meibomian gland probing in November and Chalasis (ocular surface reconstruction) surgery in December. Unfortunately, this has not been the case. They have paid out of pocket for all her initial testing, punctal cauterization, and probing in November, and surgery/medications/housing in Florida for a month in December. They spent all their savings to cover these procedures. Insurance only covered the hospital fees for her surgery.

Since December, Emily has seen the doctor January, February, May and will continue monthly through August. Ramon hopes to drive her there for the appointment in July since his job will be closed for the week. Other times, Emily’s mom helps take care of the kids during the day and Ramon takes her to and from Indianapolis airport in the middle of the night, then going to work on the same day.

The cost for her lacrimal gland injections, out of pocket is $1650 each visit. She must see two different doctors for this. One to withdraw and make the PRP and then Dr. Maskin to administer. Airfare out of Indianapolis and rental car/Uber can vary. For the last visit airfare, rental car, and one night stay was $550 not including the gas cost for Ramon to drop her off and pick her up at the airport. That visit she was required to stay the night to make sure she was okay after the injections. Hopefully subsequent visits for injections should not require overnight stays. Her next injections are scheduled in June, July, and August.

After her last injection, it’s uncertain how often the doctor needs to see Emily. His office fee is $250 for a regular visit. Insurance does not cover this. They do not know if he will need to do more testing on her at this point. Example of monthly tests and costs are:

In-Vivo Confocal Microscopy: $900 per lid (Typically, two lids are examined during this test.)

Tear Lipid and Blink Analysis: $600 per eye

Video Meibography: $600

Fluorescein Clearance Test: $450

Medications are compounded and also not covered, running around $275 every two months.

Maintenance with probing her meibomian glands, once a year costs $6400 out of pocket. She hasn’t made it to the maintenance stage yet since her cells aren’t healing. But they don’t know what the doctor has planned next. It will be a year in November since her last probing. Her lacrimal glands will probably go on a maintenance cycle too if the PRP injections work. The interval is unknown.

If you are able, please donate to this sweet young family and share to let others know so they too can help. If you are not able to donate please pray for their healing and support, and share to let others know so they can help.

The Silva Family and the Aldersgate Community sincerely appreciate your prayers and your support. Thank you and God's blessings to you.