a new charger joins blog

id like to welcome amieli anhttp://ameliemchan.blogspot.com/d les into the blog world amelie had many probs and is doing wel her mum les is learning to b a midwife and is a good friend of mine i plan to visit her when davo moves to england two years lol ive a few charge fams over there i plan to meet shes just one of them

wonderful news from yuka

our little charge firend on the list whos a blogger has come through heat surgery wonderfuly thanks yuka for the update when it comes to chargers u will often find that the news f success is wonderful

prayers needed for some chargers

we need pray for caleb hes having probs still and is on tpn thats giving him some probs also reuban a new little charger is having a hard time withdrs they r being very negative bout stuff his condition is very simila to max in charge this often happens but then we get drs telling us there is no hope and we find there is

no pic here

am at my carers house was gonna put a pic of me but shes got none she had them they got deleated not b her or me

a new charge blog i found just tonite

http://mkweindorf.blogspot.com/ here is a new charge blog i found just now everyone read this and hope we get mroe updates bout lucas and his fam

bored

http://evanichole.blogspot.com everyone visit to c evas new site hmmmmmmmmm well some of us chargers r gonna b writing a book any oen interested email krista_amy@yahoo.ca for details they r two chargers from the list who r adults liek me and want to get the word otu so come on all the people reading my blog get started on this book they r welcoming stories form parents about their chargers pics and more cant wait to read this book speicvlay after today when i wa having a typical charge hypo and well no one but the carers at northcott who acutlay has had me at resptie during another hypo LOL rosas lucky one huh well they were the only oen who really knew the tohers didnt lol i watn a book to hand out to everyone LOL my hypos gone for now i wasnt even refluxing it jsut happens ummmmmmmmmm could it of been a late effect of tat red cordial i had yesterday well who nos im just wierd

eva

pls pray for eva max and caleb all sweet chargers having hard time at the moment caleb has no imune system needing a thymus eva and max got the dredded bug form daycare at the conf love u all

my old early intervention theacher

me and rob at my 21st forever friends of fam
us with my old carer also forever fam friends

my old ei teacher famous in the charge world and now a great fam friend is sick and didnt go to the charge conf in america i am hoping its not his heartxo hes had a bad one he was the one who diagnosed my syndrome he came in said he had others like me and he believe i had charge and he was so right 22 years later rob is still the best friend there is and he is a great person when he taught me he didnt just help me he helped my fam he made sure we all ddi stuff as a fam when he was there i have pics of him with me and my brother hes done stuff with both of us it is so important that the hole family knows whats going on and he made sure that was the case he would be with me while mum and dad went out he organised stuff with other chargers he taught me to talk and to speak and to be the person i am he made sure the drs did what they should of been doing and all in charge land love him and will miss him if anything happens to him

congrats eva on walking in charge the littlest milestone that to a normal fam to us all is like congquerying everst eva my litle charge friend has conquered everest shes started to walk with her walke with the sencory stuff in the ears absence of this can delay a chargers functions soemtimes for life soemtimes years and sometimes months it can be hard on the families as they struggle to find what is best for their charger but its a struggle all of us will face

i no i no i needd to get off hear but i am gonna put a pic of something a pic of eva lol my fave charge or one of them

a sydney charger

here is a charger who lives round the corner from mehttp://begasfamily.blogspot.com/ we both got same ent and i think have had same tummy surgeons and maybe heart surgeon to well theres only bout two heart surgeon in the kids hosp so we have of had the same i had heart surger for a central line well anyway this charger lives in coogee just liek her and we met her mum at a fundraiser thing now i talk to her on the list and read the blog often

the amazing kenedy and her mummy lisa

http://chargesyndrome.blogspot.com/ this a blog by lisa mum of kenedy lisa is the moderator of our charge group on ;yahoo she is a wonderful mother whos dream is to write the ultimite charge syndrome phd her daughter kk has charge and is truly amazing nine year old her mum ahs got this little blog for her and shes also got a site all bout charge with links to toehr stuff lisa is one of the best we love you lisa we know you never started the group casey did that but still THE BEST lol

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

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

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

charge

i have charge syndrome it is very complex but very interesing each leter stands for something i am a charger with many probs