Donate to Liliana's Journey to Health and Healing

My name is Roxana and I’m hoping to explain what my daughter, Liliana 6, is currently battling.

In early November 2023 she was experiencing random symptoms like headaches, pain in both ears, pain in both her eyes, stomach pains, chest pains, mild fevers and leg pain. All of these symptoms would only happen one at a time until they began to get more persistent into the month of December 2023 when her legs were hurting that she was struggling to walk and slept throughout the day. I took her to the emergency room in Seguin, TX in hopes that they would know what was causing the pain. They believed the reason for her leg pain was because at the time she was five years old and her birthday was in January and assumed she may be going through growing pains, therefore, they discharged us and said to give her Tylenol and Motrin for the pain (which I had done) and told us to follow up with her doctor (this was a Friday so we wouldn’t be able to see him till that Monday). However, when we left, the pain in her legs were only getting worse. That night that we had left, she was having trouble sleeping and cried through the night. By the morning, she couldn’t walk anymore. I had to carry her around the house and even then when I touched her feet to look and see if I seen anything weird she would cry because they hurt her so bad. I decided to take her to the New Braunfels, TX hospital since they were a little bit more advanced than our small town emergency room. When we got there, I explained to them her symptoms and they decided to do an x-ray on her feet to make sure she didn’t have any fractures. When the x-rays came back, they said that it looked somewhat abnormal and was thinking that she may have had a fracture that they couldn’t see and possibly hurt herself. All they did was give her pain medication and a boot for her foot and suggested that she use crutches in the meantime, till we followed up with her doctor for more care instructions which again was not until another day and a half. So we went back home.

We get home and I noticed her feet begin to swell which really freaked me out and definitely confirmed the feeling I had that what the doctors were telling me wasn’t right. Right away I made the decision to take her to the Children’s Hospital in San Antonio, TX.

We get to the Children’s Hospital emergency room and I explained all the symptoms she was experiencing as well as the hospital visits. They put us in a minor care room and took some blood. About 1 hour later they come back in and told us that they would be admitting her and placing her in an overnight stay room. they told me that the lab results showed signs of her body fighting an infection, but don’t know where the infection is coming from. They put us in a room and hooked her to an IV to give her medicine for the pain that she was having , to take more blood if needed and to keep her hydrated while she slept.

During the two nights we were there they ran several tests but couldn’t figure out what the cause was and where the infection was coming from. They also told me because she didn’t have her symptoms “ long enough” as in at least having them for three months and up they couldn’t do any more advanced test testing, they told me that if she continued to have the symptoms long enough, I could bring her back and then they would be able to do so. It was frustrating since I still didn’t have an answer, but I was also remaining positive for the fact that they were able to control her symptoms and she was feeling better temporarily , including being able to walk.

as they were discharging us, they were telling me to follow up with her pediatrician, they also asked me if I was aware that she had a heart murmur. This definitely took me by surprise because out of all of her pediatric visits never once was a heart murmur suspected.

During her follow up visit with her pediatrician a couple of days later, the doctor put in a referral to see a cardiologist. About one and a half months later we finally got into see the heart specialist. During the visit the cardiologist determined she had Aortic valve regurgitation and also wanted to do labs of his own through an infectious disease specialist because of his suspicion of rheumatic fever and rheumatic heart disease which causes heart failure (the symptoms that she was having go hand-in-hand with this diagnosis).

Once the labs were complete (they were done on a Thursday, they called the following day (Friday) and asked if I could bring Liliana back to redo the labs because of the results they received and wanting to make sure before they officially diagnose her. That same day on Friday I took her to do the labs again and that they would follow up with me Monday. Monday comes around and I get a call at work and they asked that I bring her in the same day so that she could receive her first injection of Bicillin.

Liliana currently sees eight different specialists, including her pediatrician and treatment centers. Since December 2023, we have had a long journey and will continue to since her treatment is scheduled for the next 15 years. All of her doctors are wonderful. They have been very helpful and patient so that I understand everything that is going on with my daughter. A discussion of heart valve replacement surgery has been the topic these past couple of months because this condition is causing the heart valve to weaken and her heart to slowly expand but we are doing everything we can treatment wise to prevent this in hopes that her heart will be able to heal itself since the antibodies of the rheumatic fever are a little lower than what she had started off with. There is so much to cover, but I’m hoping that this gives you an idea of what my little girl is dealing with.

The reason for this go fund me is because there have been several times where Medicaid didn’t cover certain prescriptions (which ended up having to be paid cash and even with goodRX it was expensive) and labs.

Sept 2024, her rheumatologist ordered CT scans but her Medicaid plan isn’t covering it even with the appeals that were made. I have gotten many letters in the mail saying that they declined to pay for the orders. I received a message through her patient portal that they have been trying very hard to get the health plan to approve it, but they maxed out their appeals and the next step would be a state hearing. It has been four months and without these orders being done, we are at a standstill on the rheumatology side.

I’m hoping that this GoFundMe will give us a chance to raise the money to at least cover the cost of those scans.

I have attached screenshots from the rheumatologist in Austin, Texas of about how much it would cost. Anything helps especially prayer. Thank you for taking the time to read this it’s very much appreciated. ❤️