By Estephania Baez
At just four years of age, little Mariana was diagnosed with a rare disease. When doctors informed her mother that she suffered from Xeroderma Pigmentosum, a condition that only affects one in one million children, all her mother could do was ask herself over and over why her daughter, against such staggering odds?
People who suffer this condition are extremely sensitive to the sun’s rays, and exposure can cause from freckling of the skin all the way to severe blistering. The damage can alter facial features including the nose, mouth, and in severe cases can cause their eyelids to shut, making it difficult for the patient to see, breathe, or touch.
“When she was born she looked healthy, but then freckles suddenly started appearing on her skin. The freckles began on her little face. She would scratch and then strange things started appearing. I thought she was peeling too much from the sun, but when I took her to the doctor where they told me about her condition, and I could not believe it! She can’t attend school because of her condition. We have asked several schools, but they have no protections in place, since indoor light can also affect her if she is exposed for a long time. What school would close their windows or avoid having light in the classrooms?” asked Angelica Castañeda, little Mariana’s mother.
Angelica calls it a miracle to have come across Fresh Start, a San Diego-based organization that provides free surgeries and other services to infants and children born with a congenital defect, regardless of their immigration or economic situation. They have paid for people to get passports, and even covered hotel stays for family members if they need to remain in the U.S. for a period of time.
“We help all kinds of people from all over the world. We are not government-funded; all our funds come from private donations and private fundraising events,” shared their spokesperson Lupita Morales, who many families consider an angel, since she serves as the link between patients and doctors.
“She’s had like five surgeries. You couldn’t see her face anymore, She bled and looked really bad. The organization has helped us with medication, food, lodging, and passports, with absolutely everything, it’s amazing,” stressed Angelica Castañeda.
“I used to feel that I couldn’t see my face anymore, it had a lot of stuff on it. Now I can finally feel it”, added young Mariana Martinez.
Montserrat is another fighter benefitted by Fresh Start. At birth, Montserrat was diagnosed with scoliosis, a disease that causes a lateral curvature of the spine. Her parents had spent over $400,000 dollars in more than 10 surgeries before finally discovering this organization.
“My little girl looked almost like an L, she walked bent over to her right; she spend her whole preschool like that. All of a sudden, we got a call that made us cry from joy. It was from Fresh Start, letting us know that they were going to take her case. Today, my girl is doing very well after surgery number 14. As long as she doesn’t give up, we will continue pressing forward”, shared Ramon Gallegos, the little girl’s father.
In the past 25 years, this organization has helped more than 10,000 children from all over the world. These surgeries are performed every six weeks, and 50% of the patients are Latino, which is one of the most vulnerable communities.