On the 7th April 2012 my life changed. We had been for our 12 week scan for our second child. We already have a beautiful daughter, Maisie Rose, who was 3years old at the time. At the 20 week scan we found out this time what we were having; we were over the moon as it was a boy.

On the 20th September 2012, at 36 weeks, we had our boy Edward James Luckett, weighing 7lb 2oz. He was perfect. We had to stay in for 3 days but got to come home on the Sunday.  Everything was fine -­ Edward was a very sleepy baby and got a lot of ear infections but was still a happy baby.

I started to worry that Teddy did not move much. I asked friends and family but everyone reassured me he was just a lazy baby. After a few weeks I asked my health visitor and she also reassured me that he was fine and to come back at 10 months if Teddy was not sitting or rolling over. But I still wasn't happy so made an appointment with my GP, who straight away referred us to the children's hospital. After a few days I got a phone call from the hospital. At this point I was still thinking he had low muscle tone and all would be okay. We had an appointment for the next week.

When we got to the hospital we went in a room with two doctors who looked Teddy over and asked a lot of questions. One question I remember was "could we be related" me and my husband? We looked at each other and said no. As soon as we came out of the appointment I said to my husband, “What a strange question” and he said, “They are just asking” but I said, "No, I think they know what is wrong”. We had a blood test done and were asked to come back a week later for a meeting.

After a week we had a meeting but only to say that we needed to come back tomorrow for a meeting and be prepared, that it may not be good news. On Tuesday the 23rd of April 2013 we got the heartbreaking news that my beautiful baby boy had a life shortening illness know as Spinal Muscular Atrophy type 1. I found the Jennifer Trust a great way to find info about it, as I had never heard about it before.

But my baby boy was doing so well. He was floppy but very happy, he loved watching his sister and was eating very well and making sounds. We had long chats about what we would do and never hid it from his sister. I found it hard talking about it because he was doing so well. We always said we would do what's best for him and not us. We made the hardest decision only to put him on the ventilator once and if he needed it and we didn't want him to have a tracheostomy, only because they both come with risks that will just add to the pain.

On the 11th July 2013 my life as I know it ended. We rushed Teddy to A&E after being to the doctors twice that week. As soon as we got to hospital he seemed to go really downhill fast and was rushed out of A&E and in to HDU and within minutes was on a ventilator in intensive care, his lungs had failed and the machine was breathing for him. He was sedated and the machine was bleeping and alarming.

Just 3 days later, on the 14th July 2013, the doctors said they would take him off the ventilator and try him on a non-invasive mask. He was not up for it and within minutes was back on the ventilator. 11 more days went by and on the 25th July his big sister came into the hospital to say goodbye just 8 days after her 5th birthday. We have always told her the truth and we just said, “We need to get him off the ventilator and on to a non-invasive mask but if it doesn't work he will go to heaven” and she replied, "I don't want him to die".

At 10:30 that morning we put him in a full face mask and it worked. The next few hours were hell but he did it and was doing well. On Monday the 29th July we moved out of ICU and on to HDU and Teddy was off the full face mask and on a nasal mask. He was doing well and was having time off it and was breathing alone.

On Saturday the 11th August 2013 my little Teddy was not happy. He had had a bad night and was not doing well, no time off the mask. By Saturday afternoon his breathing was laboured, he was hot and crying in pain. A few days went by and he was no better, he had stopped having breaks off the mask and wasn't happy. I just looked at my husband and said, "He's not happy, I can't do this to him". He had gone really downhill and it wasn't fair on my poor baby boy anymore. Sadly, on the 14th August 2013, my gorgeous baby boy lost his fight with SMA in his mummy's arms with his family around him - 5 weeks and 6 days before his 1st birthday. No words can describe the loss we feel. The pain will never go away but we are so glad of the time we had with our baby boy.

Mummy's prince

Daddy's boy

Maisie's teddington   

RIP Edward James Luckett

20/9/12 ❤️  14/8/13