Riley Dufala ongoing medical expenses

7/1

Please keep Riley in your prayers. She is currently in surgery. They have 6-7 hours marked off total for all procedures. She is having the following done. gallbladder removal / new broviac line / liver biopsies / GJ placed. With the constant vomiting and seizure activity it’s going to be very tricky to keep her comfortable especially during transfers. She is bed and wheelchair dependent right now. This recovery is going to be a rough one. She is so incredibly strong. It looks like they will be staying at least through the end of the wk. All your thoughts and prayers are greatly appreciated. She has a wonderful support team which we are extremely grateful for.

6/1

The last 21 hours have been very traumatic. Riley experienced seizure activity last night. They believe it has to do with her chiari malformation with possible other brain issues. She went by ambulance to Saint Vincent where she continued to have seizures. They sent her by ambulance to Pittsburgh this morning. The seizures are still happening. She has had around 30 since last night. They are waiting for several tests to be done and results to come back. Riley was scheduled for surgery next week to get her gallbladder removed, for a liver biopsy along with a few more procedures as well. Riley is emotionally and physically exhausted.

Paityn was with them for the episodes. Nothing a sibling should ever witness. She did amazing and just kept telling Riley she needs her and to stay with us. Please keep the prayers coming. We need answers and a plan. Riley appreciates all the thoughts and prayers. Love you all.

5-16

It's been months since I've done an update on Riley and I apologize. Her health continues to deteriorate and the doctors still have no answers. Jessie has not been able to work for 3+ months because Riley is not healthy enough to be left alone. She has undergone so many surgical procedures that I can't even count them anymore. They have traveled to so many places and still have no answers. I believe the next step to try is to see doctors in Boston and Texas.

Riley and her family are pushing through blindly in the hopes to find help. She has been diagnosed with so many things to which none of them seem to have a cure. Riley turns 19 on the 29th and I know there were many many times they didn't think she was going to make it to her birthday. It's crazy and it's not right and the not knowing is the worst part. We just don't understand what is happening.

I'm asking for donations for Riley and her family...any amount helps....but MOST importantly I'm asking for prayers for Riley and for all of them.

I will try and update more frequently...so many have been so generous and it's so appreciated!! Thank you!!

Up to date info on Riley

"Our girl has been through so much this month from hospital stays and surgeries to wkly trips to Cincinnati for stim implants. We were in Cincinnati wed-Thursday got home last nt. She had another surgery this morning. She is amazing and finished her first semester of nursing at Gannon with all A’s and B’s. She is forced to make some hard decisions to better her quality of life with many upcoming surgeries. It hurts all of us watching her go through her daily struggles. Please keep her in your prayers. She has such a long road ahead of her." Continued prayers and support are greatly appreciated!! Thank you!

Latest update on Riley:

Please keep our girl in your prayers! Due to the increase in nausea and lack of heart meds being digested Riley passed out hit her head which caused a concussion and black eye. She is pretty miserable at the moment. We had to get a CT scan.....

Chiari malformation of the brain was found on the scan this isn’t related to the fall but found. Our team at Childrens is amazing. Our lead Dr. already called me just minutes after the findings and reassured the neuro surgeon being added is amazing and will help us. This is not going to interfere with us going to Cincinnati just another bump in the road that will need addressed and fixed. This information was definitely hard to hear. We have faith and know God is good and will guide Riley.

Last wk we were in Pittsburgh to discuss our options. After the mri results came back they decided that surgery will be necessary but we could continue with Cincinnati children’s hospital for the ib stim implant first. This is going to take place this wk. Then to Columbus, OH for the stomach pacemaker then back to Pittsburgh for a mediport placement and the chiari malformation brain surgery. The next few months are going to be very busy. We will have to visit Cincinnati wkly for approximately 5-6 consecutive wks for them to regulate the implant while fitting the stomach pacemaker in and the Pittsburgh surgeries as well. Please keep our girl in your prayers. As we have a plan it’s a rough one to watch her go through. We love and appreciate you all. Please continue the thoughts and prayers.

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Unfortunately, Riley’s health is still declining.

Since the last update, Riley was officially diagnosed with intestinal failure, and CIPO. Due to her vomiting and pain worsening, all oral meds have been stopped and now they are now doing meds by administering shots 4 times a day, and meds through her picc central line. Her picc is also the only way she gets any nutrition and hydration.

They are sending her to Cincinnati and their goal until then is to keep her comfortable and support her through the miserable state she is in. Riley’s medical team in Pittsburgh now has a medical team being put together in Cincinnati for the ib stem implant, stomach pacemaker and anything else they feel necessary. The family is on call for the go ahead to Cincinnati. They are not going to have much notice and will be traveling to Cincinnati as soon as they’re ready for them.

They'll have very little notice and they’re not sure how long they will be there.

I really cannot begin to thank you all for your support for Riley. She is a fighter and tries her best to stay strong and positive and cannot begin to express how thankful she is for all of the prayers, love, and overall support. We ask that the prayers keep coming and once again thank you all.

Update on Riley....had another very long surgery today to put in another ng and gastro motility line along with the picc line she already has in her arm to try and get nutrition in her. The doctor who specializes in this area said she's never seen a stomach shaped and distorted as Rileys is now. The cost of traveling, etc is growing so any help you can give would be most appreciated!! And as always keep the prayers coming!!!!

Hi! For those who don't know me, my name is Michelle Monday and I'm setting up this gofund me to help Riley Dufala and her family with the cost of taking time off work for hospital stays and for medical bills.

Riley was recently diagnosed with severe health issues that she has now been battling for 5 months. Through several surgeries, hospitalizations, doctors appts, and frequent trips to Pittsburgh, she has been diagnosed with multiple chronic illnesses. These include, Hyper Mobil Ehlers Danlos syndrome, POTS, Type 1 Diabetes, Chron’s disease, AMPS and severe Gastroparesis.

She requires an NJ tube with 24 hour continuous feeds. This is the only way for her to get the nutrients needed to keep fighting. She has undergone several tube replacements with each one taking a toll on her. Through all of her struggles, and the constant pain, Riley has remained brave and has put her faith in the Lord. She hopes to start Gannon in the fall to pursue her dream of becoming a nurse. This is going to be challenging with her daily battles but she's determined! She also has a 4-5 day hospital stay with multiple procedures within her first couple weeks of school.

Riley has worked since she was 14 and has contributed where she could but now she hasn't been able to work. She knows her parents have not only been tasked with medical bills, medical equipment and hotel costs, but on top of it is upset she can't work to help.

I would love to be able to help them with some of these extra costs if anyone would like to contribute, but prayers would also be greatly appreciated. Riley is so very appreciative for all of the thoughts and prayers she has received and we ask that they keep coming. Thank you!

Michelle