We hope to receive stories from other sufferers. If you would like to share them with us, please send them to us. We would love to hear from anyone wishing to contribute to this site.
In December 1999, I received a letter from a family in the USA informing me that they had been contacted by doctors hoping to start some research into the cause of Melnick-Needles Syndrome.
This research is being done in the UK. I subsequently contacted the doctors involved and in February 2000, our family became involved in this research. One of the doctors came to our home and discussed in detail what would be involved,their aims for the research etc.
Basically, blood was taken from Aymie, myself and my husband (a small piece of skin can also be used in this testing, but was not required from us), so that a DNA picture can be made into finding the specific gene responsible.
Hopefully very soon we will know how things are progressing. I will of course, keep you all updated on this. We will be featuring on this page over the next few months the progress of the tests and research now being carried out on Aymie.