Super Stanley


Stanley Oscar Newman was born on 9th May 2012 after a normal, full term pregnancy weighing a healthy 7lb 10oz, a baby brother for Robbie and Alfie. For about a year everything seemed fine but Rob & Laura (dad & mum) began to notice a regression in his strength. They "googled" floppy baby and were horrified at the search results. 

They know that Stanley has a problem somewhere between his brain and his muscles, for some reason the signals are not getting through properly. This makes him very weak and floppy, and affects all the muscles in his little body, including things like his swallow refex and bowels.

Stanley has had many tests most of which at Addenbrookes Hospital in Cambridge. He has had several blood tests, genetic testing, MRI, EMG, heart scan, muscle nerve conduction testing to name a few and as yet we still do not have a diagnosis, and without a diagnosis it is very hard to get information and support. This is where SWAN UK (Syndromes Without A Name) come in, SWAN UK is a project run by the charity Genetic Alliance UK offering advice and support to families of children with undiagnosed genetic conditions. The support of SWAN is immeasurable, which is why the family wanted to give something back.  With a lot of help from their friends they managed to raise over £5,000 for SWAN UK.

On 25th June 2014 Stanley was diagnosed with Congenital Muscular Dystrophy or CMD, a slowly progressive genetic muscle wasting disease which has no cure or medical treatment. His muscle and blood samples have been sent to GOSH to try and establish which type of CMD Stanley has (there is more than 30) and so our journey continues.