Woman ‘trapped’ in the body of a 12-year-old

TIME is running out for a 25-year-old woman who is trapped in a body of a 12-year-old girl.

Kate Quinn does not physically resemble the woman that she should, and is yet to develop womanly features or to even have a regular menstrual cycle.

“Some people believe that it is vanity, but it is not. I suffer from a rare condition that has stopped my development — I suffer from caudial regression syndrome [CRS],” she said.

Ms Quinn, from Mooncoin, Co Kilkenny, has lived all her life with a condition that is so rare she was diagnosed only two years ago.

CRS is a relatively unknown syndrome which describes a wide spectrum of conditions or malformations and occurs in one in 25,000 people.

Along with CRS, Kate also suffers from scoliosis (a curvature of the spine) along with numerous problems with her major organs including her heart, kidneys, bladder, bowel, stomach and lungs.

Apart from having part of a chromosome missing, she is also missing a major valve in her heart, her stomach was upside down and turned the wrong way around and medics did not find her second kidney, which was hidden in her pelvis, until she was six-months-old.

Despite all her complications, Kate, as a young teenager, remained hopeful that she would go through the natural changes associated with puberty.

To this day she is still waiting and as each year passes, the chances of puberty happening either naturally or with medical aid is diminishing.

“At 14 it was hard, but I had some hope that I might develop. Now at 25 it is a lot harder because the question is — is it too late,” she said.

Kate has attended a variety of clinics in a number of Ireland’s top hospitals, but they could not find solutions to her development problem.

At the age of 23, Kate was sent to a specialist hormone clinic in a top Dublin hospital, and was told that the trauma endured as a result of complications from her condition has put a halt to the natural development process.

While at the clinic she was started on a hormone treatment — usually used in fertility treatment — to try and kickstart her development.

“It was like winning the Lotto with the joy I felt. I was put through scans which found that I was producing some follicles in my ovaries, but not as much as a woman my age is supposed to. I was told to take the tablets for eight weeks and another appointment would be sent out,” she said.

Kate waited for the appointment to come and when it didn’t she tried in vain to contact the clinic. After six months the clinic got back to her and apologised for the delay.

This is not the first time a frustrated Kate has had to fight for hormone treatment. At the age of 14 Kate stood a little over 3ft 6in. She convinced her consultants to start her on growth hormone treatment and after seven years of daily injections she proved them wrong when she grew to 4ft 9in.

However, she believes she has run out of options in Ireland and is looking at treatment abroad.

“I have been living in limbo, and that is why I decided to go public with this issue. CRS is very rare and I think light has to be brought to the condition and in raising awareness of it I hope others who suffer from it will stop feeling isolated and alone as I do.”