Abigail was born on 22nd May 2006 an apparently healthy 9lb 14oz baby. The first few weeks of her life were much as my wife Rachel and I expected a mixture of sleepless nights, dirty nappies and lots of cuddles and happy times. It was only when our health visitor noticed at 6 weeks that Abi wasn't gaining weight and wasn't feeding as she should be that she referred her to see a paediatrician.

It was clear as soon as the doctors saw her that they were concerned about her and on the initial visit they told us that they thought what Abi had would be life changing, they took blood tests and told us that we would have the results a week later. That week seemed to take forever and when the time came to go to the hospital for the results our heads were all over the place. What happened next changed our lives forever, the Doctors told us that Abi had Type 1 SMA and that babies with this condition don't usually live past their 1st Birthday. I remember feeling at the time that our whole world had collapsed but after the initial shock we both vowed to make the time we had with Abi as special as we could and to try to stay as positive as possible. 

Shortly after her diagnosis the hospital put us in contact with Spinal Muscular Atrophy Support UK, they arranged for one of their outreach workers, Maggie to come and visit us and she brought with her a big box of sensory toys for Abi to play with. They were also always there for us if we had any questions or issues we needed to discuss. The next few months were so special and we tried to do as much as we could with Abi, we had her Christened and went away for a short holiday with her and created so many happy memories. When she was around 4 months old Abi got a chest infection and needed to go into hospital for a week. When she came out she required extra oxygen to help with her breathing but nothing seemed to phase her and she just kept smiling through everything. At the age of 5 and a half months old we noticed Abi had started to really struggle with her breathing so we took her up to hospital again, the doctors thought she just had a bug and did not seem overly concerned, however all through the day her condition deteriorated and by that night we realised that we didn't have long left with her. The next day the specialist who had seen us since Abi was first diagnosed came to see us and told us that we only had a few days left with her. We contacted our closest family to come and see her to say goodbye and shortly after they came she passed away. We have always been glad that our family were there with us and also that there was no panic when she passed away. 

Since Abi passed away we have been raising money for the SMA Support UK and with the help of our Family, Friends and also some complete strangers we have raised over £40,000. It has really helped us through some dark times to have something to focus on and we know that the money we raise will be put to good use. 

Phil and Rachel Moralee