“Scleroderma (sklair-oh-DUR-muh) is a rare autoimmune disease and rheumatologic disorder that involves the hardening and tightening of the skin. It may also cause problems in the blood vessels, internal organs and digestive tract.

Scleroderma is often categorized by type: "localized" or "systemic" which refers to the degree of skin involvement. Although, both types can involve any of the other vascular or organ problems.

While there is no cure for scleroderma, treatments can ease symptoms, slow progression and improve quality of life.”

My family and I know all too well how devastating the effects of this disease can be.

In 2020, after a year of testing, and also changing pediatricians, our 4 year old daughter, Isabella was diagnosed with Scleroderma. At that point, the disease had been spreading to other places on her body causing lesions to appear randomly. Her body was about 40% covered in these lesions. Also around that time, we had recently introduced our youngest daughter, Iliana.

Due to the prices of childcare, and Taina’s obligations to all of Isabella’s doctor’s appointments, Taina decided to become a stay-at-home mom.

Caring for the 2 kids proved to be very difficult. After about 2 1/2 years, Iliana was diagnosed with Autism. Between her Autism and Isabella’s Scleroderma, Taina had a lot going on. Iliana now had multiple appointments she needed to go to and Isabella had already been on so many medications at that point, from injections to pills, you name it!

At the age of 7, Isabella had already dealt with so much. Rheumatologists, dermatologists, gastroenterologists, orthopedic specialists, multiple biopsies and tests, STILL no one has slowed the progression. They all say how rare the condition is, her case being one of the rarest and most severe. We were even told that Isabella is the only child in all of South Florida with this condition.

Now here we are in 2025. Isabella is 9 years old, Her body is about 90% covered in lesions and her left leg has been completely taken over by this disease. It is basically skin and bone. It is becoming stiff and the skin is completely rough and cracking, leaving her prone to cuts and infection. She doesn’t have the energy of a normal 9 year old, and doing everyday activities can be difficult at times, but she still pushes herself and tries to stay positive and in good spirits despite this. Unfortunately, she was being bullied in school and called names like “broke leg.” She was coming home crying, asking why she can’t be like a “normal kid.” Due to this, we made the difficult decision to home school her.

She has been inflamed for about 3 years now and it is progressing at an alarming rate! It seems doctors are stumped with her condition. Everywhere those lesions form, gets taken over like her leg and all they continue to do is try different medications to hopefully mitigate the issue. Even Chemotherapy drugs such as Cyclophosphamide. Unfortunately, it is difficult to get some of these medications approved by the insurance which is prolonging treatment. Every day spent without treatment, Isabella is deteriorating and we don’t have time to waste!

This disease is taking a toll on our family. There is NO CURE only treatments to try to slow the progression, but it continues to spread and get worse! My wife and I pray everyday for a miracle but always seem to fear the worst. My poor daughter has woken up every night crying and in pain for the last few years and this condition is depriving her of being able to have a normal childhood. Nearly a year ago, she was hospitalized for 5 days due to an infection on the affected leg. Since then, she’s had multiple minor infections and was diagnosed with “Impetigo” which is a bacterial infection that can lead to sores and blisters. We feel like we have to keep her in a bubble to keep her safe because of this.

Through research, we heard about a specialist out of Pittsburgh, Dr. Torok. Unfortunately, with me being the only one working, our family could not afford to take the trip which was desperately needed to get my daughter the medical care she needs.

The National Scleroderma Conference, & Kids Get Scleroderma, Too! is a conference that travels around the U.S and offers workshops, panel discussions and other educational sessions led by leading scleroderma researchers and health care professionals. The National Scleroderma Conference is a great way to learn about the disease as well as learn about new research and breakthroughs in the search for a cure while becoming connected with others that are dealing with the disease.

With the help of Dr. Torok, the National Scleroderma foundation, friends and family, we were able to see Dr. Torok as well as attend the conference. Our family believes this is crucial in helping Isabella thrive and live a better, healthier life. Unfortunately this is very costly and we are asking for donations to help cover the travel expenses to get Isabella to her appointments and also pay for some of the medical expenses that insurance does not cover. Especially, the out-of-state expenses.

If you can please find it in your heart to help our family!

Any amount is appreciated!

We are desperate to help our daughter before this disease takes over!

If you are unable to donate, we understand. Just please keep Isabella in your prayers! We need a miracle for our baby!

This is in God’s hands!