The Beginning

As anyone who suffers with Ushers will know it is a trying disease which has a profound effect on not only the sufferer but those around them. All too often this is the frightened parents coping with the prospect of watching the child they love struggling to cope with a world that doesn’t really know or understand their illness. It is the children who have to realise that their Mum or Dad are “different” and can’t see them grow up or hear their words. There is one group however that very few people mention or consider and that is the partner of an Usher sufferer.

These people share the hardships of life not through having to because of hereditary but through love and caring. These people feel the pain of the sufferer but also feel their own pain. These people fight each day to survive for themselves and their partner. I know I am one of them.

I think to understand my life you need to know the full story. It may take a while so sit down and make yourself comfortable.

It all started one beautiful August afternoon (13/8/1991 at 2 pm to be precise). I was being a Good Samaritan and helping a teacher find the area office. There I saw a beautiful lady in a flowery sundress that captured my heart immediately. To look at her you would never know she has Usher’s and if her colleague (a mutual friend) hadn’t said I wouldn’t know of her disability. The next day I telephoned her and arranged a date. She was very open about her condition although at this point we didn’t call it Usher’s but RP.

I quickly fell in love with this beautiful lady and it wasn’t long before we started dating. I guess I realised the true extent of her illness till we had been going out a fortnight. She came to stay over and we went to the pub for the evening. As it was summer we left in bright sunshine and everything was easy. By the time closing time came it was dark. We walked home and Nicole clung on for dear life. In fact her grip was so tight it hurt and she stumbled a few times. Being a new relationship and a gentleman I didn’t say anything until we got home and asked if she was ok. She explained that she couldn’t really see anything during the walk. It didn’t change the way I felt about her but it made me think.

I took my wife to meet the parents and the rest of my family (I lived away) the following week. They fell in love with her instantly but didn’t fully understand her illness until darkness fell. They lived in a flat which had dark outside stairs. We had to climb them followed by my mum and dad and brother. As we climbed I told her “step, step, step, level”. Later my brother asked what the instructions were for so we explained. Still we didn’t know about Ushers..we thought she just had RP!!

Our love grew and a year later we married. I loved her with all my heart just as I do now but neither of us knew what lay ahead of us. We struggled to start a family and had IVF. We never thought it the day would come but the little blue line finally materialised. We headed to the docs for confirmation. At the end of the joyful visit the doctor asked Nicole “so what is Ushers Syndrome?” We looked non- plus at each other as this was the first time we had really heard of it. The doctor just shrugged and told us not to worry about it until after the baby was born.

Nicole had a real hard pregnancy. High blood pressure and pre-eclampsia prevailed throughout and I nearly lost her on the operating table but we came through and we had our first daughter. A few weeks later we went back to the doctors as we wanted to know about how Nicole’s disease would affect our new baby. The doctor sent us to a genetic counselling. It was at this meeting that our world started to fall apart. I will tell more in part 2 of my story