The Buntings

My twin daughters were born in March 1967, they were both a good weight, Caroline 6lb 12ozs and Alison 6lb 7ozs. They were both perfect until 3 months old when Caroline developed Eczema very badly loosing a layer of skin. Looking back now and at all that has happened over the years it must have been the beginning of XP. I used to put their pram out in the garden with a sun canopy over the both of them, unbeknown to me the sun must have been getting to Caroline then.

When Caroline was two years old she became very freckled. I thought nothing of this because she was fair skinned with red hair and assumed it was a natural thing. She then developed what I can only describe as something looking like a horn on her nose. A visit to the dermatologist caused quite a stir.

They were very interested in the freckling at that time, and it was at that time we had our first visit to King's College Hospital in London where I was asked no end of questions such as, was I married to an Arab, was Caroline conceived in a very hot country. They really had no idea what was wrong with her. They removed this horn which turn out to be malignant growth no. 1.
There have been 80 of these growths with only one being non-malignant.

When Caroline was 13 she had a huge growth on her nose, it started like the size of a pea and ended up almost covering her entire nose. My husband and I use to take her to medical conference meetings at King's College where it was decided, because this disease was so unique, to allow this growth to grow.

Meanwhile Caroline was away from school for more than a year and was given a drug to reduce the growth in size but unfortunately when it decayed away it took the front part of her nose away, and we think the drug she was give stunted her growth. She then had to go to East Grinstead to have plastic surgery at the Queen Victoria Hospital.

At this time no one really knew what this disease was, the dermatologist concluded it had something to do with the ultraviolet rays of the sun. We didn't know at this time it was a genetic disease and during the 70's and 80's, there were no support groups and no advice. No one suggested having the light blocked out at our house. I was given lotion at this time to put on Caroline before she went out, always covered her up well with long sleeves and a sun hat and because her eyes were affected she had prescription sun glasses. Caroline also has a hearing loss of 75% and has a hearing aid.

Caroline has never worked because when she was at school and was discovered to be deaf, we wanted her to go to a deaf school but the authorities said no, as she had a hearing aid, they suggested she sit at the front of the class but of course because she had lost so much schooling being in and out of hospital all her life she was way behind. When she was 16 Caroline went to a special unit for young people with learning difficulties where she was helped a great deal and ended up doing office work, typing etc. but had to leave at the age of 21, we have had no help in getting her placed in a job and she had been at home since where my husband and I care for her.
Last year she was admitted for day surgery to have two very large growths removed from her legs and despite several skin grafts now has a huge hole in her leg. We brought her home the day after and a nurse came in for a month to change the dressings. Caroline also had to have a brain scan last year because she had problems walking and had been falling over a great deal. They concluded that part of her nervous system has been slightly damaged.

We have never been able to go on holidays or even to the coast for the day. We had one farm holiday but again Caroline had to be well covered up. Our whole life has been affected as a family but we did what we thought was right. Things have been especially difficult for Alison as her twin in really lots of ways especially with Caroline being teased at school for being so different.
When Caroline was first diagnosed I spent a lot of time in and out of various hospitals with her while my husband looked after Alison at home.

My husband and I do not know what the future holds for Caroline, we have to attend the hospital every three months, where sometimes she has to have small growths frozen off.

I think Caroline was born at the wrong time really. Had it been now the future would, I think, be brighter for her.. I hope this information helps in some way everybody involved with XP especially the families of XP patients. I wish you all well.