My son Tyler was born in 1999 with a rare syndrome called Smith Lemli Opitz syndrome. Shortly after his birth we were advised he only had days to live, he fought against all odds but his life was still short. 

He had many problems, one being unable to suckle so, from the day he was born he had to be fed via an NG tube until he had his first operation to have a peg fitted. He started doing better but at 3 months old I noticed he wasn't responding to sounds and it was confirmed he was deaf in both ears. 

At 9 months old and weighing only a pound more than his birth weight, he was diagnosed with cataracts in both eyes and another operation was needed. He had over three operations on his eyes to remove the cataracts, giving him artificial lenses to help with his sight. After the operations he could still only see the difference between light and dark. His life was not only silent but dark too. 

Despite this he kept fighting and started to gain weight. Throughout everything he would always have a loving smile. He was continually in and out of hospital with one infection after another, but still he kept smiling and fighting. We celebrated his 2nd birthday and then his 3rd, the doctors couldn't believe how well he was doing. 

He had a severe sensitivity to sunlight and UV rays so it wasn't easy to take him outside even on the cloudiest of days. He had to wear full sunscreen and be kept in the shadows. This meant we couldn’t take him out the house much and he never got to enjoy a trip to the beach on a sunny day. 

At 4 years old he still couldn't stand or sit up by himself, he couldn't even hold his own head. It was getting harder to carry him as he now weighed the same as any other 4 year old. Things were hard but Hope House were there to help us out. They allowed us to have a rest but still stay with him. He loved his time at Hope House and the care givers there were amazing. 

By the time he was 4 and a half he’d been doing much better. He'd had no unexpected hospital stays, no infections and things were looking up as he had new equipment to help us look after him. Life was good until.... He caught a cold so I took him to the doctors. They said his chest was clear and there was nothing to worry about. We put him to bed after a little physio on his chest to make sure it was clear, he would struggle to clear his own chest. In the morning he was still unwell so we decided to keep him off school. Then at 2:30 in the afternoon our world came crashing down, he lay in his bed and took his last breath. 

Hope House at this most difficult time gave us so much support. They gave us the time to say goodbye and do the last things a mum could do for her son.