Does anyone out there have this syndrome or know of someone who does.

My 3 year old grandson has just been diagnosed with LMS. There is so little information. I can't find any prognosis or what to expect in the future.

My daughter will be 3 in October and has lateral meningocele syndrome. The prognosis is good in general. I considered it a win compared to some if the other syndromes she could have had... Definitely Google Lateral Meningocele Syndrome. Here is a link to an article my daughter's neurosurgeon helped write about my daughter http://thejns.org/doi/abs/10.3171/2016.9.PEDS16311?journalCode=ped.1 

We would love to hear from anyone who might have or know someone who has this very rare syndrome. As far as I know, there are less than 20 people in the world with it.