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