October 2012, 6 weeks to go until my due date. My fiancé Steve set off on a business trip to Washington DC. If it had been any closer he wouldn’t have gone, but a whole 6 weeks (and if the baby’s anything like me he’ll be late anyway) it was too big an opportunity to turn down! As he was leaving we joked, “Wouldn’t it be funny if baby arrived while you’re gone! What if I go into labour at work?” “Ha-ha no chance of that, he’s your son!” Steve said.

The next morning, my waters broke.

I didn’t know what to do, I’d phoned the midwifery unit where I was booked to deliver, but they couldn’t take me until after 37 weeks. I was referred to Broomfield hospital, in Chelmsford. My mum came and picked me up and drove me in, and I was admitted to the day assessment unit.

I hadn’t started having contractions, but because it was so early, I had to have steroid injections in my legs to help develop the baby’s lungs.

Steve had only been in the USA for 16 hours, of a 6 day trip and he was on a plane back again! That’s when my contractions started. When he arrived at the hospital, it was only an hour or so until I was moved to the labour ward, he arrived just in time!

At 2.30 on the 11th of October, our beautiful son was born. There was something different about him though, the skin on his face was very uneven and puffy, like it was very thick in some places, and fine in others, and at the corners of his lips and eyes were deep splits. The midwives put him on my chest for a quick cuddle, and then he was rushed off to the neonatal ward.

We waited in the labour room for several nerve-wracking hours, not knowing if he was ok, or what was wrong. Those were the scariest few hours of my life.

At approximately 5.30pm the doctor and some nurses from the neonatal ward came to see us. They explained that Daniel was in an incubator. They told us that he had been born in a collodion layer, which is usually an indication of Ichthyosis, and gave us a printout from Wikipedia! One of the doctors had seen a collodion baby once before in another hospital but for the rest of the staff this was their first experience of this condition.  I think I remembered seeing a documentary about Harlequin Ichthyosis but I obviously had no experience or idea of what was to come. Our first thought was relief that our baby was alive and we couldn’t wait to see him.

We again had a long wait, it seemed like a life time but at approximately 7.30pm we were taken to see our amazing baby Daniel!

We arrived at the neonatal ward to find Daniel in an incubator with tubes and wires everywhere. He looked so tiny. The doctors explained that Daniel was being kept in 90percent humidity and was being given morphine in case he was in pain. He had a coating of 50/50 paraffin on him and we gradually learnt that this would have to be applied every hour to make sure his skin remained hydrated and that it would not split further.

During the 3 weeks Daniel was in hospital, Steve and I started looking for more information on his condition.  The hospital had very little that was specific to us; we were given a lot about other aspects, mostly related to prematurity; but weren’t able to get anything in detail about Ichthyosis.

Then we found the ISG.

All the information we had been struggling to get a hold of, suddenly opened up! We had answers to lots of our questions, we were reassured that Daniel was getting the right treatment, and found that we were in no way alone in this.

There was a big list of different creams and ointments that were tried and tested for use with Ichthyosis, and all sorts of ways to get in contact with people who were qualified to answer our questions: other parents and sufferers.

This year we went to the ISG family day at Blenheim Palace. If we thought our previous contact with the ISG had been exciting, we were completely unprepared for how kind, generous and helpful everyone was with their knowledge. There was a great sense of camaraderie, and it was so good to have a forum to discuss all aspects of the condition, and hear other peoples experiences. No praise is high enough for the organisers and medical professionals who made the event possible.

The ISG changed our life, and they really deserve the recognition that the Lottery Awards could bring.