By Nicolas Fernandes
A mom battling tumors that are crushing her skull is hoping for surgeries to rebuild her face and stop her daughter from being bullied because of her appearance.
Christina Acosta, 50, of Fullerton, California, USA, has Neurofibromatosis Type 1 (NF1), a disorder that has caused the left side of her face to deteriorate for the past 48 years.
The single mother was diagnosed with the rare incurable genetic disorder before the age of two and has been battling it ever since.
In addition to the physical effects the condition has caused to her face, small tumours grow all over her body.
She also endures a large amount of pain every day, her hearing is impaired on the left side and she cannot see out of her left eye.
Symptoms of NF1 started to slowly show in Christina‘s left eye when she was a toddler and progressed as she grew older.
By the time she was in her 30’s, it started to worsen, as she noticed she was developing tumours in new places on her body.
Due to the severity of the rare disorder, Christina no longer works full-time but is currently working as a telemarketer from home.
Christina said: “I get really bad headaches, my body is in pain all the time and I’m always in and out of the hospital.
“I get throbbing pain where the tumours are and it hurts even if I or someone else lightly touches my face.
“The constant change is so difficult to deal with. I can get a tumour removed and then another one can develop. And it’s so difficult to accept the fact that there’s no cure for this.
“After I turned 30, I started growing tumours in various different spots on my body and it started becoming even more difficult to live my life.
“It’s difficult having this condition as an adult because people don’t realize that I’m intelligent. They see me as challenged.
“It has prevented me from keeping a steady full-time job and being able to take care of my daughter in the way that I want to.
“I try so hard to do so much, but people never accept me for who I am. Even if I can get to a point where it’s not that difficult, it will eventually get difficult again.
“Losing my left eye was a very big change for me. Ever since then, I’ve been bumping into people when turning around because I can’t see them right away.
“I wouldn’t be able to see if someone was sneaking up behind me. I have to be extra careful going through life.
“I am able to drive, but I have to continuously be turning my head to make sure I see things.”
Christina is trying to raise $30,000 (21,456 GBP) for operations that would reshape her eyelid and reconstruct her facial figure – through GoFundMe and YouCaring.
Another procedure that Christina hopes to have done in the future is electrodesiccation, which would remove hundreds of tumours from her back, stomach, chest, legs, arms and feet with an electrical current.
She has received many tumour-removal surgeries that were covered by insurance but would have to pay for these ones herself because they are considered ‘cosmetic’.
Christina believes the procedures would cause others to accept her more and lessen the teasing that her eight-year-old daughter experiences at school due to her mother’s appearance.
Christina said: “I know I’ll never look perfect, but I just want to look presentable. I want my condition to at least be less visible.
“I don’t want my daughter to deal with getting teased because of the way I look anymore.
“Her classmates are always asking things like, ‘why does your mom look like that?’ and ‘what’s wrong with her?'”
NF1 is caused by a defect in the gene and affects 1 in 3,000 people.
Carriers of the condition have a 50 percent of chance of passing it on, but approximately 50 percent of carriers did not inherit it, according to Diana Haberkamp, executive director of Neurofibromatosis Midwest.
Not everyone with NF1 has noticeable physical differences, Diana added. Some have tumours internally and others have no tumours at all. However, NF1 can also cause additional conditions.
Diana said: “How each patient is affected varies greatly. Approximately 50 percent of people with NF1 have learning disabilities.
“A host of other conditions are more common in NF1 than in non-affected people.
“For instance — bone abnormalities, scoliosis, poorer muscle tone, poorer fine and gross motor skills, seizures, vascular tissues, speech issues, cancers and obviously depression.
“Some of the most difficult struggles of the condition are finding good care and knowledgeable doctors as well as the lack of awareness and understanding by the public.
“The biggest physical struggle is the large plexiform tumours.
“I don’t think there will be a cure until we can alter a person’s genetic makeup, but I think there will be newly discovered treatments to control or slow down some of the complications.”
You can donate to Christina‘s cause at https://www.gofundme.com/new-face-neurofibromatosis or https://www.youcaring.com/christinaacosta-801692.
To learn more about Neurofibromatosis, visit https://www.nfmidwest.org/.