Donation protected
my son's story from birth till today
( im sorry story is so long ….its a 24 year story.)
deciding to share my son's story was/is the hardest thing i have had to do.
i gave birth to edwin 17th october 1990 waiting to hear a cry but i heard no crying, i saw the doctors leave the delivery room with my baby…..i cried out but no answer….after few minutes later the doctor returned with my baby and said “we didn't want to scare you till we explained...edwin has a bilateral cleft lip and palate which means mid-face everything is open and not connected” then they handed edwin to me where my world collapsed on my chest. we were left there to come to terms with situation.
i had blood clotting and was forced to stay in hospital 2 weeks,in those 2 weeks ,,edwin kept losing weight and blueish in color but doctors kept telling me he is fine its his cleft palate ...ofcourse we believe what doctors say and go on with things.
2 weeks later they said my clot was clear and we could go home after they do the vitals for edwin. they checked his height weight and listened to his heart and said i'm sorry we have to transport you to children's hospital edwin has heart murmurs.
we were rushed to children's hospital and straight away cardiologist did echo scans and said why is this child 2 weeks late? he has both lungs filled with blood and holes in both sides of heart. i can't remember RNSH’s reply…. i was too busy screaming and praying. we were taken to a private room and told if we don't operate edwin will die within a day or 2,if we operate he has 10% chance of survival. i told them they have to operate i know he will survive.
he had 2 open heart surgeries in that month and was named the first miracle baby to survive open heart weighing only 900 grams. he spent 3 months in intensive care recovering.
then they started thinking about other surgeries like correcting his cleft lip and palate etc.
all surgeries went well ….we finally could see edwins face like a normal child.
after several more operations he developed subglottic stenosis which meant they had to do a tracheotomy so he could breath through there, as his airway was collapsing from too many ventilating tubes.
almost 1 year in hospital we finally was told we can go home after one more test,a genetic test ...we did that and they told us edwin has a deletion of chromosome 22.11 a syndrome called VCFS/shprintzen syndrome/22q11 del syndrome/catch 22 syndrome. we got discharged thinking all it meant was that he has heart problems and cleft lip palate.well, thats all we were told.
from age 1 to 3 and half edwin had a tracheostomy and a lot of chest infections and pneumonia.
Our first good news came just before he turned 4 .
edwins ent professor was retiring and he wanted to do one last operation and he picked edwin. he did a complete reconstruction of edwin's airways and removed tracheostomy. we were ontop of the world so thankful so blessed.
from age 4 to 16 he had over 30 procedures to do with his vocal chords webbing and breathing problems.
then things started to get better from 16 to 22 ...edwin was always non verbal husky voice no one could understand but he was a happy child. smart in electronics ect.
he enjoyed going to TAFE and finished 2 certificates in business and 1 certificate in IT.
for fun he loved playing poker and was good at it too. weekends we always spent with cousins and family enjoying their company. everything was going so well for edwin till he was 22.
then one day he came home from TAFE and said,i don't want to go anymore i quit. i thought hmm well he is 22 an adult and if he wants to quit thats ok. so he quit,.
very very slowly we noticed edwin getting more withdrawn, depressed, less smiles , not wanting to go out or play poker ….all this happened so slowly we didn't see what was happening. he spent more time in his room alone, started slowly eating dinner and lunch there,then slowly started laying down a lot, not wanting to do anything at all. when he turnned 24 he was a different person, always in bed unless we dragged him out. one day he came out and said mum what happened to me i wasn't like this….i can't do anything anymore….i didn't know what he meant. then few days later he ran to me crying and holding his head saying what's happening to me,my head hurts i can't do anything anymore mum. i rushed him to doctors and arranged a CT brain scan and we were told this study is abnormal for age .he has brain atrophy and prominence of ventricles and an empty cellar. no idea what all that meant rushed to GP and she said it means he has alzheimer's disease. try give him a good life while he is around nothing can be done…….i came home in shock and went google crazy reading day and night thinking why now ….why must he suffer after he suffered for years.
i started noticing slowly how forgetful edwin is, he leaves stove on,opens fridge for a drink leaves fridge door open sometimes even forgets he took a drink and comes for another drink,slowly he forgot how to write,speak…. he was forgetting people and what connection they had with us,asking me to write family names explain who is who…...he was getting confused about certain family videos he was watching. other days he would come out and say,mum tell me please is it the end of the world? i would say no edwin it isnt ...he would reply THANK YOU with relief...he would ask me same thing about 20 times a day and answer me with a big THANK YOU …..THATS ALL I WANTED TO KNOW MUM . and he would go to bed.
this went on few weeks.
then one day he came out of his room raging with anger….hitting the walls,banging his head on walls ,hitting his head with hands and saying i cant do this anymore i just want to die,what happened to me mum? he opened front door and rushed outside walking away from house screaming i want to end my life,please delete me.
we eventually were able to hold him down and force him in car and take him to emergency hospital. he was seen by the mental health team and diagnosed schizophrenia and severe depression was given anti psychotic medication and discharged.
a doctor was sent from mental health team every day for a week to check on edwin.
the following week every day he would wake up in anger and walk out of his room pacing around house,saying he wants to die and getting violent with me and hubby,hitting us over and over telling us we shouldn't of had him.please delete me,i want to die. breaking glass, computers whatever was visible around house...we called ambulance and ended up in hospital again.
his dose was doubled and he was even worse than ever now.
sometimes took 3 of us to hold him down so he doesn't hurt himself. i couldn't take it any longer couldn't watch my son suffer so i stayed up that night and tried to think what i can do to help him and Dr Shprintzen name came to mind ( that's his syndromes name),i googled the doctor and found an email address and sent him edwin's story and to my surprise i got a reply within an hour saying, edwin has a complicated case but nothing we haven't heard of before ….i felt so relieved,he then got me to send him all of edwins medical reports and video tapes i have of him when he gets out of control. i sent everything and within 4 days i was told by email that they will be contacting me via a video call ,,,which was a few nights ago, i was so happy to see dr shprintzen and dr Faedda and anne higgins all talking to me face to face all the way from new york. they agreed that the medication has made him worse. and that he needs to be on different kind of medicine and that too much dopermine going to wrong parts of his brain. they organised and sent medical journals about the medications and treatments to head space.
No cure is known for 22q11.2 deletion syndrome as yet.
unfortunately the new medication isnt on pbs in australia yet. this is why i am pledging for help please help edwin get some kind of life back. help me get my sweet gentle edwin back. i have exhaused the medicare system. unable to keep up with medical bills or even everyday living expenses, its a struggle for us.
there are alot of things in the private sector but unfortunately edwin wasnt eligible for private fund because he was born with complicated problems..... so that is all pre exsisting.
we are seeing private psychiatrists now weekly.
We end up in emergency when we cant control him or hold him down.all they do is tie him down so he doesnt harm himself for several hours till he forgets what happened and snaps out...every day he suffers in a dark place.
now mental health team says they cant help because its genetics and they have no idea about his syndrome.
i thank you all for reading Edwins story.... please pray for him.
( im sorry story is so long ….its a 24 year story.)
deciding to share my son's story was/is the hardest thing i have had to do.
i gave birth to edwin 17th october 1990 waiting to hear a cry but i heard no crying, i saw the doctors leave the delivery room with my baby…..i cried out but no answer….after few minutes later the doctor returned with my baby and said “we didn't want to scare you till we explained...edwin has a bilateral cleft lip and palate which means mid-face everything is open and not connected” then they handed edwin to me where my world collapsed on my chest. we were left there to come to terms with situation.
i had blood clotting and was forced to stay in hospital 2 weeks,in those 2 weeks ,,edwin kept losing weight and blueish in color but doctors kept telling me he is fine its his cleft palate ...ofcourse we believe what doctors say and go on with things.
2 weeks later they said my clot was clear and we could go home after they do the vitals for edwin. they checked his height weight and listened to his heart and said i'm sorry we have to transport you to children's hospital edwin has heart murmurs.
we were rushed to children's hospital and straight away cardiologist did echo scans and said why is this child 2 weeks late? he has both lungs filled with blood and holes in both sides of heart. i can't remember RNSH’s reply…. i was too busy screaming and praying. we were taken to a private room and told if we don't operate edwin will die within a day or 2,if we operate he has 10% chance of survival. i told them they have to operate i know he will survive.
he had 2 open heart surgeries in that month and was named the first miracle baby to survive open heart weighing only 900 grams. he spent 3 months in intensive care recovering.
then they started thinking about other surgeries like correcting his cleft lip and palate etc.
all surgeries went well ….we finally could see edwins face like a normal child.
after several more operations he developed subglottic stenosis which meant they had to do a tracheotomy so he could breath through there, as his airway was collapsing from too many ventilating tubes.
almost 1 year in hospital we finally was told we can go home after one more test,a genetic test ...we did that and they told us edwin has a deletion of chromosome 22.11 a syndrome called VCFS/shprintzen syndrome/22q11 del syndrome/catch 22 syndrome. we got discharged thinking all it meant was that he has heart problems and cleft lip palate.well, thats all we were told.
from age 1 to 3 and half edwin had a tracheostomy and a lot of chest infections and pneumonia.
Our first good news came just before he turned 4 .
edwins ent professor was retiring and he wanted to do one last operation and he picked edwin. he did a complete reconstruction of edwin's airways and removed tracheostomy. we were ontop of the world so thankful so blessed.
from age 4 to 16 he had over 30 procedures to do with his vocal chords webbing and breathing problems.
then things started to get better from 16 to 22 ...edwin was always non verbal husky voice no one could understand but he was a happy child. smart in electronics ect.
he enjoyed going to TAFE and finished 2 certificates in business and 1 certificate in IT.
for fun he loved playing poker and was good at it too. weekends we always spent with cousins and family enjoying their company. everything was going so well for edwin till he was 22.
then one day he came home from TAFE and said,i don't want to go anymore i quit. i thought hmm well he is 22 an adult and if he wants to quit thats ok. so he quit,.
very very slowly we noticed edwin getting more withdrawn, depressed, less smiles , not wanting to go out or play poker ….all this happened so slowly we didn't see what was happening. he spent more time in his room alone, started slowly eating dinner and lunch there,then slowly started laying down a lot, not wanting to do anything at all. when he turnned 24 he was a different person, always in bed unless we dragged him out. one day he came out and said mum what happened to me i wasn't like this….i can't do anything anymore….i didn't know what he meant. then few days later he ran to me crying and holding his head saying what's happening to me,my head hurts i can't do anything anymore mum. i rushed him to doctors and arranged a CT brain scan and we were told this study is abnormal for age .he has brain atrophy and prominence of ventricles and an empty cellar. no idea what all that meant rushed to GP and she said it means he has alzheimer's disease. try give him a good life while he is around nothing can be done…….i came home in shock and went google crazy reading day and night thinking why now ….why must he suffer after he suffered for years.
i started noticing slowly how forgetful edwin is, he leaves stove on,opens fridge for a drink leaves fridge door open sometimes even forgets he took a drink and comes for another drink,slowly he forgot how to write,speak…. he was forgetting people and what connection they had with us,asking me to write family names explain who is who…...he was getting confused about certain family videos he was watching. other days he would come out and say,mum tell me please is it the end of the world? i would say no edwin it isnt ...he would reply THANK YOU with relief...he would ask me same thing about 20 times a day and answer me with a big THANK YOU …..THATS ALL I WANTED TO KNOW MUM . and he would go to bed.
this went on few weeks.
then one day he came out of his room raging with anger….hitting the walls,banging his head on walls ,hitting his head with hands and saying i cant do this anymore i just want to die,what happened to me mum? he opened front door and rushed outside walking away from house screaming i want to end my life,please delete me.
we eventually were able to hold him down and force him in car and take him to emergency hospital. he was seen by the mental health team and diagnosed schizophrenia and severe depression was given anti psychotic medication and discharged.
a doctor was sent from mental health team every day for a week to check on edwin.
the following week every day he would wake up in anger and walk out of his room pacing around house,saying he wants to die and getting violent with me and hubby,hitting us over and over telling us we shouldn't of had him.please delete me,i want to die. breaking glass, computers whatever was visible around house...we called ambulance and ended up in hospital again.
his dose was doubled and he was even worse than ever now.
sometimes took 3 of us to hold him down so he doesn't hurt himself. i couldn't take it any longer couldn't watch my son suffer so i stayed up that night and tried to think what i can do to help him and Dr Shprintzen name came to mind ( that's his syndromes name),i googled the doctor and found an email address and sent him edwin's story and to my surprise i got a reply within an hour saying, edwin has a complicated case but nothing we haven't heard of before ….i felt so relieved,he then got me to send him all of edwins medical reports and video tapes i have of him when he gets out of control. i sent everything and within 4 days i was told by email that they will be contacting me via a video call ,,,which was a few nights ago, i was so happy to see dr shprintzen and dr Faedda and anne higgins all talking to me face to face all the way from new york. they agreed that the medication has made him worse. and that he needs to be on different kind of medicine and that too much dopermine going to wrong parts of his brain. they organised and sent medical journals about the medications and treatments to head space.
No cure is known for 22q11.2 deletion syndrome as yet.
unfortunately the new medication isnt on pbs in australia yet. this is why i am pledging for help please help edwin get some kind of life back. help me get my sweet gentle edwin back. i have exhaused the medicare system. unable to keep up with medical bills or even everyday living expenses, its a struggle for us.
there are alot of things in the private sector but unfortunately edwin wasnt eligible for private fund because he was born with complicated problems..... so that is all pre exsisting.
we are seeing private psychiatrists now weekly.
We end up in emergency when we cant control him or hold him down.all they do is tie him down so he doesnt harm himself for several hours till he forgets what happened and snaps out...every day he suffers in a dark place.
now mental health team says they cant help because its genetics and they have no idea about his syndrome.
i thank you all for reading Edwins story.... please pray for him.
Organizer
armina acopian
Organizer
Seven Hills, NSW