Family

I come form a very big supportive family at home its jsut me mum and dad and my brother David who is now 28. Dad only has one brother who i see less now than i did when i was younger. Peter dads brother lives up near Byron Bay and doenst really keep in contact with us very much we are lucky to talk once a year i keep in touch with his daughter my cousin Nina through facebook. We would see them mroe when dads parents were alive They died when i was ten or eleven. dads family has many cousins all living a long way away. They are very accepting of my disability and are allwyas happy to see how i am doing. Mums family are the ones ive had more to do with Mum is one of five ner her brothers ad sisters have allwyas helped out one of her sisters has a downsyndrome person to so they are all very supportive of me and my needs. Mums parents are the msot loving people you could ever meet they were allwyas there for me and all the otehr grandkids as often as they could. When i was in the Sydney Childrens hosptial grandma would be up eveyr single day. I have allwyas have been very close to grandma and grandpa and have many fond memoires of them. Grandma comes form a veyr large family to we have very many extended relatives so a family get together can often be quite busy. we only live five mintues form grandma so we see her often Grandpa just died last year they were married for nearly sixty years. David has allwasy been very supportive of me we have been known to have our usual ups and downs as most siblings do but i adore my brother to death and he loves me. He had a very hard time when i was younger coz of all my hosptial visits he would often be left otu mum has a good friend from when she was little who has a son similar age so shed come and take him for days as often as she could. Dave ended up boarding for his highschool years and is now engaged to a wonderful lady form Tasmania. We all love Lauren and are happy to have her as a part of oru family Mum also has two best firends who i consider my auntys Julie and Alex these ladies do any thing and eveyrthing for me and allwasy have. I am lucky to have such a supportive family as i know alot of people with disabilities arent as lucky as i am.

Early years

I was born in 1985 in King Georgi the fifth hospital in Campedown and was imediatly rushed to the old Campedown Childrens hosptial where i spent the first six months of my life. I was born with a cleft lip and palate colabomas of the eyes hearing loss and gut problems. It was very hard for my family as they didnt know what i had till i was at least three when an early intevention teacher from Northrocks school for deaf blind came out and saw me and said he knew i had CHARGE syndrome. This was farily new at the tiem so people were still learning.about it. I had many surgeries and therapies when i was little the therapies i can remember as learning to walk talk mum has told me how they would make me track soemthing by using bright colours.

Introduction

Imagine spending months and years not knowing what will happen next. Weather you live or die. You just take it one day at a time and hope for the best. Now imagine Not seeing very well or hearing at all . Im Ellen Howe and i have Charge syndrome and this is the stroy of my life

aknklogements

over time this will build up but here is a start

Their are so many people in my life that have been important for me it is hard to name them all but first id like to than my wonderful mum and dad for all the support that they have given me through out my life. My grandparents but msotly mums parents for their love and encouragement they have allways given me. My aunty and uncles and cousins for the endless love and support they have allwasy provided. Rob last my first ever teacher and the one to diagnose me with CHARGE SYNDROME for the great wrok he did when i was little.All my drs at Campedown Childrens Hosptial especialy Hugh Martin Paul Hutchins and all the nruses to. All the drs and nurses at Sydney Childrens Hosptial expecialy Caral trudgett and Kara Munro two great nruses that were very instrumental in my care Clare Cunningcam my paeditrition Susan adams my surgeon and allm the other drs and nruses that were involved Kate Steinbeck my adult endocronoligst for only five years for her great wrok with my oesteoprosis My new endocronoligst who has taken me on. Vic Duncoombe my new gastro dr David Lowenger my ent and all the other drs nruses and professionals that have played a role in my life. The northcott soc8iety Beth Heng my mannager at cpp the wonderful carers there The recreation team All my firends especialy Sev Laura for the idea Shirl All my carers espeicaly Aulie Ruth and many many others All the families i met through hosptial Marg and her angel mel Steph and her fam Sam Farr and her fam and so many others and my wonderful charge families through the list and of course those i have met YOU ARE ALL THE BEST and last but not least any one who has been in my life the past 25 years i couldnt of done it with out you.

reason for a new blog

Well first id liek to say my reason for a new blog one of my good firneds has said i should write an autobiography and i like the idea and i will over time write one but i thought here would b a good place i plan to write ideas and throughs and stuff ive been through in autobiography form then publish it