Patricia Dunn, reading on behalf of her mother, Mrs Camilleri

I contracted rubella in my very first stages of pregnancy Initially, while I was carrying I was not very concerned about it and neither was the family doctor. This was all due to lack of awareness at the time. Nonetheless, I had medical supervision right through, and no one was unduly worried as my pregnancy was easy going. One has to bear in mind that this happened 46 years ago and we were not living in this country.

I had no problems with my childbirth either. It was very straightforward and the baby was a good weight of 7 lb 6oz. He looked gorgeous, except that his eyes were closed. I was told that this might have been due to an infection in the womb, and that he will open them soon, which he did after a while.

Stephen fed well from breast and bottle. However, at one month old, he got a cold. Our doctor checked him and discovered his cataracts. It all started from there! His dad and myself and also our close family members were devastated. Little did we realise what lay ahead! Stephen did not develop like other babies, and because of a lack of knowledge as to what to do regarding his cataracts, his dad and myself decided that we should emigrate to England.

We managed to do that as our country was still under British rule and we were in possession of a British passport. That, however, meant a lot of hardship for us all, including our daughter, who was just four years old when Stephen was born. So, when Stephen was only three months old, I left on my own with him to start with. I stayed with distant family and friends for a few months, and being away from home caused me great anguish.

After a few months, my husband and daughter joined me and we stayed some time in lodgings, sharing facilities with others. This meant we left everything behind, our families, our house, possessions, and my husband’s job. In the end, in desperation, we managed to buy our own house, even though this caused us a lot of financial hardship.

In the meantime, Stephen’s handicap manifested itself to the full. He was found to be blind, deaf and severely mentally retarded. In the first year of his life, his cataracts were dealt with at Moorfields Eye Hospital, which was then in High Holborn, in London, with very little success, because of the damage at the back of his eyes.

The first contact we had with Sense, or “The Rubella Group” as it was then known, was through Peggy Freeman, who along with other mothers, founded our Association. She put us in contact with someone who was starting a pre-school group for these unfortunate children. Stephen was accepted. He was about four years old at the time and he used to be collected by bus every day. This, of course, helped me very much indeed.

Stephen spent many years going to this group, which helped him quite a lot also. owever, having a rubella child does not disqualify you from other afflictions in life. I was suffering from severe endometriosis and I needed constant treatment and after years of pain, a final serious operation. By now Stephen was 13 years old, and while I was being treated in hospital, Stephen had to be taken and looked after, in a fashion, in a local hospital. He took this very badly indeed. Later, we were advised by the Social Services to place him in care, as I was still quite weak, and Stephen was becoming quite difficult to manage. So eventually, he had to go and live in a hospital. At first this placing was satisfactory, with reasonable care and attention, but as the years went by, it deteriorated due to lack of staff. Stephen missed out a lot during the 13 years he spent there. The Rubella Group with whom, of course, I was still in contact, used to take him on holidays, which was a blessing for him. He was taken to Church Road, in Birmingham, several times.

One of the persons involved with these holidays was a very kind and capable gentleman called Paul Ennals. On his sound advice, I applied for funding for Stephen to be admitted to Sense in Birmingham. Cutting a very long story short, Stephen was granted funding and taken eventually to Church Road, and placed in one of the flats organised for these young people. Stephen was now 26 years old.

The change in Stephen was simply dramatic! His life improved immediately. We could see it after only a few weeks. He became a more civilised human being! At the long-term hospital, he had no communication whatsoever and absolutely no stimulation. He developed a lot of bad habits there like slapping himself on the head and regurgitating his food. These habits lessened immediately and after a few years, his regurgitating disappeared, although by now, it had destroyed his teeth through the acid he brought up

After a few years, Stephen was moved to the house where he now lives at Gillott Road, in Edgbaston, Birmingham. He is happy there and knows and everyone seems to be fond of him.

Of course, Stephen is still severely disabled especially as he has no sight at all and no useful hearing. He is also brain-damaged. However, his quality of life is much, much better than it ever was and Sense has given him the chance to use all his potential.

The only drawback there is in all of this, is the fact that he is far from us, as we live in Mitcham, Surrey. At first we used to visit regularly, but as years go by and we are getting older and both with medical conditions, we are finding it more difficult to travel. However, this is not too drastic, as we keep in touch by phone, and we are sure that Stephen is getting the best of care. When we do visit, we are always most welcomed by all the staff, as they regard that as part of their duty of care and they do look after us. Nadine Richards, the Care Manager, has a good and compassionate way of dealing with us and this reflects in all her staff. Of course, this gives us great comfort as we know that Stephen is in their kind and capable hands.

Our son has been with Sense for the last 20 years and we certainly have no idea of what would have happened to him if Sense was not there to fulfil all his needs, in the difficult life that he leads. Thank you Sense for helping our son and others like
him.