Unfortunately I am now very poorly but mummy still managed to get my picture took with my beautiful quilt, thank you love quilts uk for making mine, my mummy's and daddy christmas by getting my special blanket to me just in time. Lots of love, Baby Nelle xxxxx
Sadly, Nelle passed away on 2nd January 2015 :(
My beautiful daughter, Nelle Francis, was born 3 weeks and one day early on 02/09/2014, weighing just 5lb 1oz. Even though she was small, she was perfect and considered a healthy little girl. At 5 days old she was discharged from Ipswich hospital and sent home to start a lovely life with Mummy and Daddy. And for 10 blissful weeks, that is exactly what we had. Looking back, I can';t believe how lucky we were. Over time, I did notice that our little Nelle wasn';t quite being herself, she started to sleep a lot and seemed to struggle swallowing when feeding. One thing I found strange was that she would never hold anyone';s finger, usually such a common thing for babies to do. I took her the Dr';s on many occasions, six times to be exact, were each time I was told I was ';over reacting'; or ';worrying too much because I';m a first time mum';. One time they made me feel so silly for taking her that I actually went home in tears. However upon taking her to get weighed at baby clinic, the health advisor suggested I take her to see a paediatrician at our local hospital, and to get her there within the hour. I had no idea how serious things were about to become, I';ll never forget the Dr saying to me ';has she always been this floppy?';.....this just made no sense to me, my little girl was here because she wasn';t eating enough lately - not for anything else, and I had taken her the Dr';s twice in the 24 hours prior to that and been told she just had a sore throat.
The next three weeks were a nightmare. Little Nelle had x-rays, an MRI scan, lumbipuncture and gave 10 pots of blood - which had to be drip squeezed out of her as her veins were so small. I just didn';t understand what was happening to my baby. We were told the wait would be 7 to days however a week after Nelle giving blood the hospital called her back in to give more - they had lost her other samples. This not only added on to our agonising wait but also meant Nelle had to have another four pots drip squeezed from her little hand. Ten days later we got her results and my world ended, my beautiful baby girl was diagnosed with a fatal genetic condition called spinal muscular atrophy type one, and given less then 12 months to live.
Due to her deteriation, dr';s have now given a more precise life expectancy of two to three months. There are not enough words for my partner and I to describe our pain. At present we are living each day as it happens and trying to fill Nelle';s life with happy experiences and create some memories for us to keep. I know the road ahead for Nelle will be tough, but mummy and daddy will love and care for our special angel until the very end xxxx