Mum Lorraine talks about the rare condition her son suffers from and how husband Mark and their two other boys have been helped by Demelza.
When I was 12 weeks pregnant with our second child a scan picked up a one in 82 chance that our baby could have Down’s Syndrome.
But I was only 30 and we were assured the odds were low so we decided not to have any other tests done.
Oliver was born on 11th January 2007, three weeks early, it was a normal delivery and he weighed just over 7lbs.
When he was born we looked at him and we could see he had Down’s Syndrome straight away.
He was very floppy and he had to have blood tests. Within a couple of hours he was rushed up to the special care unit. We were told that 50% of Down’s Syndrome babies have heart conditions and holes were discovered in Oliver’s heart.
He spent the first six weeks of his life at the Oliver Fisher Unit at Medway. He wasn’t feeding properly and he needed oxygen.
We were eventually able to take him home but when he was four months old at his christening he was having trouble breathing and we rushed him to hospital. He ended up having open heart surgery and was in hospital for about a week.
Doctors then discovered he had a very rare and serious condition called pulmonary vein stenosis which means there was a blockage in the blood vessels that bring blood from the lungs to the heart. Oliver was on oxygen 24/7 but as he has grown older he has been weaned off it during the day.
Oliver is on various medications, at any time he can cough up blood and he still needs oxygen at night.
He can’t walk properly but he has a walker and his mobility is improving. He uses sign language to communicate. He loves his food but he needs help feeding himself.
Despite all of these medical problems Oliver is a very happy child and enjoys Mr Tumble, music, horse riding, playing with his brothers on the computer and books.
We discovered Demelza when he was three. Our health visitor asked us what respite we got and we said we didn’t get any.
It was very difficult to leave him with anyone, not even our parents.
In the first year of using the hospice at Sittingbourne we were given 10 days respite and we used two days. We didn’t feel comfortable leaving him.
But as soon as we let go and let Demelza look after him he loved it. He just loves being around the other people, the attention, the music, the soft play room, he loves the hydro pool. He really enjoys the Saturday Club and does all the trips.
Our other boys, Samuel, 10 and Jacob, three and a half, stay with nanny and granddad when Oliver is at Demelza and we get time on our own. We can also do things with Samuel and Jacob that Oliver doesn’t like to do like going to the cinema or eating out.
Through Demelza we have a contact for a holiday company, they have made us aware of the direct payments scheme so we can access paid respite every couple of weeks, they helped us get a special trike for Oliver and we now have a disabled children's social worker available.
We have also been invited on trips as a family such as Lapland UK which was fantastic.
Since he’s been at school some of the pressure has been lifted but the first four years were hard work with all the hospital admissions and no respite.
We would like to say a big thanks to Demelza's staff and volunteers for all their hard work and support, they have made such a big difference to our lives. Also thank you to all the supporters of Demelza as without their donations none of this would be possible.