A woman battling a rare genetic condition has come up with her own, new form of communication after she lost her hearing and sight.
Petra Madill (35), from Carrickmines, Dublin, has Neurofibromatosis Type 2 (NF2), a condition that causes benign tumours to grow throughout the body, especially around the brain and the spine.
Ms Madill's carer and close friend, Allison Farrington, described the effect of NF2.
"Sometimes these tumours produce fluid in the brain or pressure on the brain, which has caused her to lose certain things like her hearing and her sight," she said.
Ms Madill has had 45 surgeries to limit the effects of the condition.
She is completely deaf, has only 4pc vision left in one eye and depends on the daily help of two carers.
Throughout this all, she has kept her sharp wit and humour as well as a positive outlook.
"I am determined not to let this condition beat me. I will never give up," she said.
Looking back at Petra’s struggles with NF2, it becomes clear why her carer and friend Allison said that she is “amazing” and that she “never met anyone like her”.
Petra felt the first effects of NF2 at age 13 and has been struggling against it ever since. In 2013 spinal surgery left her paralysed from the neck down. Petra worked hard in physical therapy until she was actually able to walk with the help of a cane for another three and a half years.
In September 2016 her mother passed away from the same rare condition, while Petra slowly lost the use of her legs again and was bound to a wheelchair.
In late 2017 an ulcer in her remaining eye became so bad that the doctors decided to sew it closed to minimize the infection risk. All of a sudden, Petra, who had communicated through sign language up until this point, was left blind.
“She struggled when her eyes were closed. I describe it as being locked in a dark box. No sight, no sound, nothing. It must have been terrifying for her,” remembered her father, Peter.
But even then, Petra would not just accept defeat. She developed her own form of communication that she taught to her family and friends. They spell out the words - letter by letter - writing them with the finger on Petra’s cheek. Little touches on the chin symbolize the end of words, and little sweeps in certain directions are signalizing a quick “yes”, “no” or “maybe” to a question.
It might sound tedious and slow in theory but Petra is able to have full blown conversations, understand her doctors’ questions directly and order in restaurants after having the menu “read” to her. Her new means of communication enables her to live a complete life.
And while the minimal sight in her eye has returned in the last year, she is still using her new communication technique in her daily life.
“Petra only has four per cent vision in one eye and is blind in the other. That means getting enough light for her to see is very hard. If we don’t have full light, I can’t sign to her and that is when we have to switch,” said Allison.
And since she originally came up with her system out of necessity, Petra now wants to spread the word: “I do think this is something that could help a lot of people.”
She and her carers emphasize how easy it was for them to learn the new system and how much people that are blind and deaf could benefit from it.
“It is incredibly easy to learn. Everybody knows how to spell so it only takes some practice on the additional signals. Her carers learned the communication form in just two days. It was amazing to see,” said Allison Farrington.
In addition to her health struggles, it is also not an easy situation financially for Petra and her father. They both receive disability allowance. Peter has chronic back issues and has had several surgeries himself. The family cannot afford a full-time carer, so her father has to help her throughout the nights despite his own disability. Furthermore the family’s wheelchair-accessible car is close to breaking down. To help through these difficult times, Petra has set up a crowdfunding page and hopes for help.
“The only thing we all wish for is that they get some help in the house especially overnight and that she could get the new car so she could still get out of the house and live her own life. If anybody could help a little it would mean a whole lot,” said Allison.
Nonetheless, Petra will face this challenge with just as much energy as she does her condition. She is determined to work hard, but also to keep her positive outlook and contagious humour. She seems happiest in moments spent with her loved ones.