Keeley was born 10 days late (the same as the others) after a rubbish pregnancy, I was ill pretty much all the way through with colds that moved in and out of my joints. She was my sixth pregnancy I had three miscarriages.

At birth Keely was floppy, had the unbilical cord wrapped twice around her neck, and was unable to cry. She was diagnosed with Stridor pretty much straight away as the cry was almost like a whimper. I was moved onto the general ward and during the night Keely started to choke and stopped breathing, she did recover from this herself but she was still moved to the special care baby unit (SCBU).

In SCBU she had a tube put in for feeding and began a series of tests. She had a barium swallow which was fine, an ECG also fine, it was noted at this point that she had an asymetric jaw and her head was on one side and she also had a high roof in her mouth. She was kept in special care for 2 weeks until she was feeding reasonable amounts by bottle.

When she returned home it was noted that she had reflux which the barium swallow identified but when she was sick, it came back through her nose and mouth simultaneously causing choking. On one occasion Keely did start to choke on her own saliva and stopped breathing again and was rushed back into the SCBU. She was immediately transfered to Leicester Hospital where she had one other choking episode and a general anaesthetic and a camera investigation which diagnosed a floppy larynx (a cause of Stridor) which were told she would grow out of and the cry would improve within two years. This also meant when she did get upset and cried her whole chest cavity would go flat to her back which could potentially cause what they call a pigeon chest.

We were left under a consultant, who monitored this. In the meantime whilst at Leicester she was also diagnosed with a rye neck which we had physiotherapy for, this did rectify itself quite quickly. Its still not completely level but if you didn't know you wouldn't notice.

We went through a 12 month period of sleepless nights as Keely seemed to have a night cough and we were always worried about the risk of choking as previously, she was treated for asthma for this - but it turned out that her soft pallet was dropping down into her throat when she lay down as it also had poor muscle tone and was irritating her throat.

We had problems with her feeding - she wouldn't eat lumps or hard food she would just put it in her mouth and spit it straight back out again. We saw the dietician and the speech and language therapists who refered her for another barium swallow. This revealed that she had limited swallow and that food was pooling at the back of her throat and she was at risk of aspiration, but we persevered and eventually Keely started eating not normally but just what she likes, which the dietician says is fine.

We knew that Keely had problems it took ages for her to sit up by herself and she could never lift her head off the carpet so never crawled. She eventually started to pull herself upright and began to walk very stiff legged at about 18 - 19 months old. We kept seeing the consultant who did checks for Muscular Dystrophy which came back negative - she then suggested we had a muscle biopsy which was done at Birmingham Childrens Hospital in January 2006.

We weren't really prepared for the outcome and before we saw the consultant in February 2006 had never heard of MTM.

Keely has achieved all her mental goals - she struggles with play, and getting to standing from sitting, stairs, she falls over a lot and hurts herself quite easily as she has limited reflexes. She loves drawing, dressing up, going to nursery and is extremely determined which we believe has helped her a lot.

We also think if MTM had been diagnosed at birth she wouldn't be the happy and generally normal child that she is. We are not sure what the future holds but we will keep doing what we have been doing for the last 3 years and hope that she doesn't deteriorate.