i am a young girl with charge syndrome charge is very complicated but it doestn stop me form being who i am i am a good friend to everyone everyone loves me
Saturday, 23 June 2007
me and charge
well i thought id tell u my charge i was born 28th june 85 wtih a cleft lip palate reflux hearing loss vsison probs and much nore my mum and dad didnt know what i had they tried to feed me and i would vomit up so they put me in the hosp where they put a feeding gtube and jstoma and a fundo wich didnt work they were told i had charge syndrome a conditon wich was then very rare but is becoming more common www.chargesyndroem.org it stands for coanal artriesia common but doesnt effect me cleft lip palate colabomas wich i have heart wich i dotn have except abnomal veings clot easily growth retardation i have this and have had no hormones hearing loss and ear anomilies i have small eustation tubes no simi circula canals reflux wich i have and now 22 years later as i will b on thurs i am doing very wel no jstoma eating little bit by moth and am working and attending a program for people like me being an adult charger is hard but its great to
Sunday, 17 June 2007
eva a butterfly
on the charge list we find many chargers and fam who r just amazing antoerh fam ilove is eva and her mum cris and fam eva has charge and has many probs but is improving everyday her mum criss and her two brothers r the most caring fam you could ever meet they do their best to raise funds to e\help charge and other organsiations including marchof dimes http://www.babysites.com/sites/crystalm1476/ to read evas history click on the link and read all her journal history she is one amazing little girl we all love our eva
Saturday, 16 June 2007
cedie and angel charger
over the next few days ill write things bout my charge friends and u can view their lives thelife i want to talk bout now is a little girl who has recieved her wings but fought bravely cedie loving angel to mummy and daddy jen and cris and sis to dylan was a great little charger now she is an angel jen writes her experiences of grief with cedie and things she is doing http://cedielynn.blogspot.com/ it is coming to what would of been her second birthday but she is an angel pls keep her fam in our thoughts for peace and happiness jen also has her own fam blog if you scroll down and read
MIGHTY MAX and his super mummy AMY i love u both
one day two years ago a wonderful mother had a great son called max with charge she came to the list on yahoo groups and talked to us started up a blog and now http://mightymaxupdate.blogspot.com/ tow years later this is the result a beautiful little charger who is two max is a demo of how chargers fight charge is very complex many will die but max was one of those who fought on with his mummy by his side even with a daddy who was a idiot and cared no cent bout his little boy max came through all this and i a thriving two year old and one who i admire greatly anyone who is told charge is a no hoper go read max and you will see they r wrong GO MAX we love u
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