When my niece Molly was born on October 3rd 2005 she was so tiny yet bigger than her sister Summer was when she was born, she was so good and hardly ever cried, and when she had her check up everyone said she was a healthy baby, then only weeks after this we started to notice she wasnt moving her legs and wasnt very active like babies usually are. And one morning my Sister Lisa (Molly's Mum) found our Summer asleep on top of Molly's legs and she was alseep, non of us could understand why she didnt notice her bigger sister on her legs, so after this we went through the doctors and all the usual things to find out that Molly had been refered to a Doctor from Barnsley Hospital. Thats when Molly had all the tests done which usually take a while to come back but only took a matter of days, then an appointment was made with the Doctor to discuss the results. When we knew the appoinment was made we all started to worry, at first we thought she was just a slow developer but obviously not, so we went to the hospital, there was me (Sam), our Molly, my mum (Mollys Nan), our Lisa and Molly's Dad. Everyone went in to see the Doctor and i stayed in the waiting room, there was other people waiting but was out on the corridor, only I was sat in the room, i couldnt understand why no one else was coming into the room, but didnt think much about it. They was with the Doctor ages and i was worrying, all i could think of was maybe she will never walk again, and it was so upsetting, i honestly couldnt imaging anything worse.

After waiting for a while my mum walked out of the room and across the corridor to the room i was in, as soon as she saw me she burst into tears and i new it was something bad, so i cried too, it took my mum ages to tell me what it was and as soon as she said she had Spinal Muscular Atrophy (SMA) type 1 i couldnt believe it, it felt like someone hit me over the head with a brick, id never felt anything like it. I'd only ever lost 1 person in my family close to me and that was my Nannan and that was awful, it broke my heart, when my nannan was passing we all was at the hospital with her and we held her hand when they turned off the life support machine and it was horrible, after that we also saw her body in the Morgue and that gave my nightmares for months. It was a horrible experience because we loved her so much, but she did have a long life and enjoyed every minute of it, now this with our molly is just unbarable. The pain i have inside is hard to explain, i can never fully concentrate on anything, i dont even think about whats going to happen, i can talk about it but dont actually think about it, its hard to explain and you may not undertsand but if i thought about it i dont know what id do.

I've never been good with talking about my feelings or showing them, iv always kinda bottled things up and people say its not good for me, i know its not good but thats my way of dealing with it, maybe im in denial but id rather not think about it. I just wished that i could give my life for her because i would, id give every last breath for our Molly, it's unbelievable what id do for her, but it sucks not been able to do anything.

Since our Molly has had SMA type 1 she has deteriated alot, it has got to the point now where she cannot eat by mouth, she has to be constantly tube fed and she is also on oxygen 24/7. The only things she has in her mouth is her dummy and a swob to moisturise her mouth so it doesnt dry up. She can hardly do much with her arms anymore either and cannot hold up her head.

All our Molly can really do is smile, cry and laugh, shes always smiling and very happy, unfortunatly she has this condition and has been rushed in hospital several times now, but shes such a perfect baby.