Who are we?

I am Kevin, known on the forum as c17kmj, and my wife Christine is known as Christine(UK).

I was up until recently a LoadMaster on UK Royal Air Force Boeing C17 transport aircraft, and still am by choice a computer geek.

Our story began in 2000 with the birth of our youngest daughter, Kira-Nerys.
Throughout her early years she suffered terrible rashes and burns for no apparent reason.
These reactions, combined with the attitudes of members of the medical profession made for an extremely stressful time, mainly for Christine as I was frequently away with work at the time.

Kira saw a series of doctors, getting diagnoses of "dietary intolerance" to "washing powder reactions" to "Don't leave your baby in the sun for so long!".
This continued until we ourselves diagnosed light sensitivity.
We took steps to prevent further reactions while trying to convince doctors of what we had discovered.

Dr Sheru George gave us hope and a reprieve from dis-believing doctors.

After unexpectedly seeing photographs of Kira during a visit to Oxford in 2002, he requested she be referred to his care at Amersham Hospital. Our specialist agreed, and it eventually lead to an 'official' diagnosis some time later.

Kira suffers from a very rare form of Paediatric Solar Urticaria.


As you might guess throughout this time we were always desperate for more information. Through Amersham we were put in touch with the UK based XP Support Group who helped us immeasurably and through them "The XP Connection", a mailing list sponsored and run by The XP Society in the USA.

This mailing list proved invaluable for us as "new parents" and ran for some time until due to ill health the co-ordinator, Patrick "Pat" Mannix, announced his intention to stop the service.

With no alternative planned, I took it upon myself to continue and hopefully improve upon what he had begun.
Light Conversations was the result.

We are deliberately not supported financially or otherwise by any charity. This ensures our complete impartiality and allows us to give as broad a spectrum of ideas as possible.

My aim at the outset was to give anyone in similar circumstances as much information and as many different viewpoints as I could.
In short a place where you can ask and answer whatever questions you need or want to.

Until his death, Pat was a great supporter of Light Conversations, and indeed his posts remain in the forum to this day.

So there is our story, and that of Light Conversations.
Hopefully your story up to now has been less stressful, but with so little information available probably not.
You have however found us, and hopefully already have or soon will join us.