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Mikella Ferreira, Mowat-Wilson Syndrome (M.W.S.)

This site is dedicated to our daughter, Mikella (Born: 8 July 2003), who has Mowat-Wilson Syndrome, as well as all the other beautiful MWS children / challenging children and their parents.
Please explore this site to see Mikella in Action, useful information, current events, helpful professionals, our opinion and experience with available therapies, supplements and diet, etc. and feel free to contact us if you need any information, or if you feel that we can use YOUR information.  All comments and suggestions are welcome.
 
Taken on 12 May 2008, 4 Years & 10 months.    
 
What is Mowat-Wilson Syndrome?
  
Mowat Wilson syndrome is a rare genetic disorder that was clinically delineated by Dr. D. R. Mowat and Dr. M. J. Wilson in 1998.
 
Mowat-Wilson syndrome (MWS) is characterized by distinctive facial features; structural anomalies including Hirschsprung disease, genitourinary anomalies, congenital heart defects, agenesis or hypogenesis of the corpus callosum, and eye defects; and functional differences including moderate to severe mental retardation, severe speech impairment with relative preservation of receptive language, seizures, growth retardation with microcephaly, and chronic constipation in those without Hirschsprung disease.
Taken from the Wikipedia and the GeneReviews websites (see the 'useful links' page for info).  Please see the attached Genetic Information Sheet at the bottom of this page for more details.
 
 
What is Hirschprung's disease?
 
Hirschsprung’s disease is a congenital disorder of the colon in which certain nerve cells, known as ganglion cells, are absent, causing chronic constipation .
Taken from the wikipedia website (see the 'useful links' page for info).
 
 
What is the clinical diagnosis/testing for Mowat-Wilson Syndrome:

Mutations and deletions in the gene ZEB2 (also known as ZFHX1B or SIP-1) cause MWS. Sequence analysis detects mutations in approximately 81% of individuals; FISH detects large deletions encompassing all or part of ZEB2 in approximately 15% of persons; chromosomal rearrangements that disrupt the ZEB2 gene cause MWS in approximately 2% of individuals; and an additional 2% have intermediate-sized deletions that can be detected by techniques such as quantitative PCR, MLPA or gene-specific array CGH.
 

How common is Mowat-Wilson syndrome?
The prevalence of Mowat-Wilson syndrome is unknown. 170 people with this condition have been reported.
 
Taken on 17 July 2009, 6 Years and 10 days.   
 The Aim of this Website:
The aim of this website is to create awareness of Mowat-Wilson Syndrome and to request willing participants to contribute in any meaningfull way to our cause.  Intensive therapy and early intervention is needed to develop our children to their full potential.  They could possibly be integrated into mainstream schools and ultimately be living as independent adults.   
Intensive therapy is very expensive and we invite people to make a donation to the Mikella Foundation, if you wish to support our cause.  Please visit the Support page for more information.
 
Taken on 25 February 2011, 7 Years and 7 months, together with her brother Eduardo.
   
 
Taken on 24 March 2012, 8 Years and 8 months, together with her brother Eduardo at a family wedding.
 
 
 
 
 
 
 
 
 
 
Closing Thoughts
Never give your right to HOPE away to anyone.  Not to neighbours, not to doctors, not to teachers, not to bystanders. Not to anyone!  Let others lead small lives, but not you.  Let others leave their future in someone else's hands, but not you!  Many miracles are possible, you just have to believe and keep on trying.
As a parent of a beautiful and an incredibly resilient Mowat-Wilson Syndrome child, you have to stay positive everyday of your life.  You have to stay hopeful, everyday of your life.  You have to search for solutions, everyday of your life. You will not regret trying everything you have to help your child develop to his/her full potential.  Blessings are many, you just have to open your eyes to them.  You have to do all of this for the sake of your Child - and for yourself!