By Rafaela Kuznec @rafaelakuznec
Scroll down for the full story
Videographer / director: Pat Henderson
Producer: Rafaela Kuznec, Ruby Coote
Editor: Ian Phillips
Arianna Faro, from Wilmington, Massachusetts was born with Klippel-Trenaunay Syndrome, a rare congenital disorder which causes Arianna’s right leg to be grow to double the normal size and be mottled with agonizing lesions.
She frequently suffers infections which turn into sepsis and threaten to end her life.
The 28-year-old woman has endured more than 50 surgeries and spent most of her teenage years in a hospital bed.
Arianna told Barcroft TV: “I have been extremely impacted by this condition, I was spending most of my time in bed unable to walk. I went through a major period of depression and anxiety.”
She continued: “From the time I was two months old, I had septic shock, which is a side effect of the condition. Throughout my childhood, I was fine and then when I was 14, the condition started progressing again.
“And I would be in hospital 15 to 20 times a year with cellulitis or sepsis. It seemed at the time like things were hopeless.
“I was just in a repeating pattern of keep going: get hospitalised for a month, come home maybe a week or two, get hospitalised again for like a month. It was very difficult.”
Arianna admitted that she has always felt different from her peers.
She said: “I definitely felt different, especially in high school, for not being able to do a lot of the things that the other kids were doing. And I was also extremely shy around boys.”
Arianna’s mother, Cheryl Faro, told Barcroft TV: “Arianna had some rough teenage years. About 13, 14 is when her disease progressed and made life extremely turbulent for her.
“It was infection after infection, medication after medication.
“She tried to keep that vivacious bubbly, happy on the outside But we knew inside she was struggling.”
Despite all the pain and constant struggles endured, today Arianna remains positive.
She said: “It’s just knowing that you can either let a condition define you, destroy you or strengthen you.
“And I choose to let it strengthen me.”
The doctors at Boston’s Children’s Hospital have decided to make Arianna the first American to receive the ground-breaking treatment which they hope will shrink her leg, end the recurring life-threatening infections, enable her to cast aside her wheelchair to walk freely again, and give Arianna the new lease of life she desperately needs.
She has now been on the new medication for three months.
The pioneering medical treatment, traditionally used to treat forms of cancer, has so far proved to be successful, allowing Arianna to become pain-free for the first time after her condition started affecting her groin causing incredible pain when was 14 years old.
Arianna said: “Today is my first-day morphine free. I was on it for about a year.
“My doctor slowly weaned me off and today is my first day so I'm excited.”
Arianna hopes that she won’t need any further surgeries thanks to the current new chemotherapy medication she is taking and added: “It feels really good to not have to be dependent on a pill.
“Probably in the past 14 years I've had excruciating pain. So now that I don’t have it feels incredible, it's everything I could have dreamed of.”
Arianna’s mother said that so far the effects of the new treatment has been life-changing.
She said: “Arianna has been out of the hospital the past four months, which for us is unbelievable. It feels like we've travelled the world.
“I'm trying not to be overly hopeful. But I can't help and just walk around with this huge smile on my face. It's amazing, it really is.”
If successful, this pioneering trial could change the lives of millions of Americans with rare conditions getting access to potentially life-saving cancer drugs.
Arianna said: “Living with Klippel Trenaunay Syndrome has been extremely hard and extremely excruciating, but also one of the most rewarding experiences of my life.
“It taught me to have empathy and compassion for others who are going through struggles that I don't even know about.
“It's not always easy. You are going to have hard days but it's about making the good moments count for more than the bad ones.
“When you get a good moment, treasure it and when you get a hard moment know it won’t be there forever, eventually you will get to a good moment again.”