Help Amelia-Rose Live Her life
Donation protected
Amelia-Rose was born on 14/05/2015 at the Rosie hospital in Cambridge.Prior to her birth we had been told she had a hole in the heart and would require surgery soon after birth at Great Ormond Street.It would be a small operation and was nothing to worry about.We were well prepaired for this.
When she was born she was taken immediatly to the Neonatal Intensive Care Unit and checked over.To our surprise the hole in her heart had repaired its self,we were overjoyed.We were told she was requiring a small amount of oxygen because she was quite small(just over 5 pounds) but hopefully she wouldnt need it for long.
The hours led in to days and we were starting to get very concerned.The consultant told us that Amelia-Rose had started to have fits and was stopping breathing but they wernt sure what was wrong.They continued to carry out tests but all came back normal.After 2 weeks we were told we could go back via a specialist transfere team ANTS(acute neonatal transfere service) to our local hospital in Peterborough,we were so pleased and thought that she would slowly get better,how wrong was we.After just a few days in our local hospital we were rushed back to the Paediatric Intensive Care Unit at Addenbrookes in Cambridge because Amelia-Rose had stopped breathing.When we arrived she was placed on a ventillator that would continue breathing for her.We stayed on the unit for 41 nights.Numerous tests were carried out but nothing came back as unusuall.Amelia-Rose continued to gain weight and get a little stronger.We were then discharged home on 13/07/2015 after nearly 2 months in hospitals.Our other children were overjoyed we were home and all together at last.
Unfortunatly this didnt last long,Amelia-Rose was rushed back to hospital after spending only 2 weeks at home.
She was again placed on a ventillator and rushed to Birmingham Childrens Hospital by CATS(childrens acute transfere service) where we spent 7 nights and was then taken back to Adenbrookes by CATS.While at addenbrookes we were given what they believe is Amelia-Roses's diagnosis.She has Ohtahara Syndrome we were told.We had no idea what this was so we asked her consultant to explain,Dr Parker told us that it is a very rare condition that affects your brain and causes lots of different problems including stopping breathing,fits and developmental delay amongst others.Her life expectancy would be very short we were told,maybe a few months.As you can imagine this was a massive shock to us and we didnt know which way to turn.
We decided we would take each day as it comes and make the most of the time we have with our Little Miracle.Amelia-Rose has now been placed on a ventillator 8 times in her short life and had numerous hospital addmissions but she still manages to give us a little smile now and again.
Myself and my husband asked to be trained in as much as we could so we could care for Amelia-Rose at home and not have to stay in hospitals all her life.We are now trained to pass her NG tube(feeding tube that passed through her nose and into her stomach) Basic life Support,Ambu Bag(breathing bag used in hospitals)amongst other things.The reason we choose to do this is so we can give Amelia-Rose a life to remember and make memories with her family not one just stuck in hospital day after day.
We believe you dont have to have a long life to have a big life.
Amelia-Rose is on permanent oxygen,monitored for heart rate and oxygen levels and on a ketogenic diet.We have to carry suction machines and life support equipment wherever we go so things are not easy any more.We have had to give up our careers because Amelia-Rose needs 24 hour round the clock care which leaves money very tight.
We are not entiltled to any help with mobility for Amelia-Rose in this country untill she is 3 years old, if she makes it that far,hopefully she will.
We want to show her all the normal things children take for granted like cows in the field,the sea and beech,country parks,shopping centres and hopefully Father Christmas as well as all the other normal things in life.We would like her to have a few toys like a little tricycle and a play mat but all theese things need to be specially adapted for Amelia-Rose and therefor cost more money.She likes sensory lights but again theese are outside our budget.
We will use any money we receive to give Amelia-Rose a life we think she deserves,days out,toys and making memories with her family.
Amelia-Rose is now 18 months old and has beaten all the odds against her but we dont know how much longer we have with her so any money raised that will make this little angels life a bit more normal enjoyable and memorable will be so much appreciated by all of us.
There are photos on my facebook page:-
https://www.facebook.com/Amelia-Rose-My-Journey-242080066211184/
Or check out my Blog,I write this myself (sort of):-
https://livingwithohtahara.wordpress.com/
Thank you so much
Sarah,Barrie,Josh,Sophie and of course me Amelia-Rose.
When she was born she was taken immediatly to the Neonatal Intensive Care Unit and checked over.To our surprise the hole in her heart had repaired its self,we were overjoyed.We were told she was requiring a small amount of oxygen because she was quite small(just over 5 pounds) but hopefully she wouldnt need it for long.
The hours led in to days and we were starting to get very concerned.The consultant told us that Amelia-Rose had started to have fits and was stopping breathing but they wernt sure what was wrong.They continued to carry out tests but all came back normal.After 2 weeks we were told we could go back via a specialist transfere team ANTS(acute neonatal transfere service) to our local hospital in Peterborough,we were so pleased and thought that she would slowly get better,how wrong was we.After just a few days in our local hospital we were rushed back to the Paediatric Intensive Care Unit at Addenbrookes in Cambridge because Amelia-Rose had stopped breathing.When we arrived she was placed on a ventillator that would continue breathing for her.We stayed on the unit for 41 nights.Numerous tests were carried out but nothing came back as unusuall.Amelia-Rose continued to gain weight and get a little stronger.We were then discharged home on 13/07/2015 after nearly 2 months in hospitals.Our other children were overjoyed we were home and all together at last.
Unfortunatly this didnt last long,Amelia-Rose was rushed back to hospital after spending only 2 weeks at home.
She was again placed on a ventillator and rushed to Birmingham Childrens Hospital by CATS(childrens acute transfere service) where we spent 7 nights and was then taken back to Adenbrookes by CATS.While at addenbrookes we were given what they believe is Amelia-Roses's diagnosis.She has Ohtahara Syndrome we were told.We had no idea what this was so we asked her consultant to explain,Dr Parker told us that it is a very rare condition that affects your brain and causes lots of different problems including stopping breathing,fits and developmental delay amongst others.Her life expectancy would be very short we were told,maybe a few months.As you can imagine this was a massive shock to us and we didnt know which way to turn.
We decided we would take each day as it comes and make the most of the time we have with our Little Miracle.Amelia-Rose has now been placed on a ventillator 8 times in her short life and had numerous hospital addmissions but she still manages to give us a little smile now and again.
Myself and my husband asked to be trained in as much as we could so we could care for Amelia-Rose at home and not have to stay in hospitals all her life.We are now trained to pass her NG tube(feeding tube that passed through her nose and into her stomach) Basic life Support,Ambu Bag(breathing bag used in hospitals)amongst other things.The reason we choose to do this is so we can give Amelia-Rose a life to remember and make memories with her family not one just stuck in hospital day after day.
We believe you dont have to have a long life to have a big life.
Amelia-Rose is on permanent oxygen,monitored for heart rate and oxygen levels and on a ketogenic diet.We have to carry suction machines and life support equipment wherever we go so things are not easy any more.We have had to give up our careers because Amelia-Rose needs 24 hour round the clock care which leaves money very tight.
We are not entiltled to any help with mobility for Amelia-Rose in this country untill she is 3 years old, if she makes it that far,hopefully she will.
We want to show her all the normal things children take for granted like cows in the field,the sea and beech,country parks,shopping centres and hopefully Father Christmas as well as all the other normal things in life.We would like her to have a few toys like a little tricycle and a play mat but all theese things need to be specially adapted for Amelia-Rose and therefor cost more money.She likes sensory lights but again theese are outside our budget.
We will use any money we receive to give Amelia-Rose a life we think she deserves,days out,toys and making memories with her family.
Amelia-Rose is now 18 months old and has beaten all the odds against her but we dont know how much longer we have with her so any money raised that will make this little angels life a bit more normal enjoyable and memorable will be so much appreciated by all of us.
There are photos on my facebook page:-
https://www.facebook.com/Amelia-Rose-My-Journey-242080066211184/
Or check out my Blog,I write this myself (sort of):-
https://livingwithohtahara.wordpress.com/
Thank you so much
Sarah,Barrie,Josh,Sophie and of course me Amelia-Rose.
Organizer
Sarah Costigan
Organizer
