Bobby's Future
Donation protected
Hello and thank you for spending the time to read little Bobby's story. We thank you in advance for your time and support.
On 11th may 2013, we gave birth to our beautiful baby boy, Bobby.
On arrival, Bobby was motionless and very floppy. He was rushed out but returned soon after and we were told he was 'just a lazy boy'.
He wasn't feeding, bottle or breast, so we were syringing milk into his mouth. Mum and Bobby remained in hospital for 6 weeks in the paediatric intensive care unit while they ran extra tests.
We were later informed that little Bobby had Chromosome 14q Deletion Syndrome and Gastro Oesophageal Reflux Disorder (GORD). No one is able to tell us what the future holds for us and Bobby, but they have told us to expect Bobby to have learning difficulties and to be physically disabled although they are not able to say to what extreme.
Chromosome 14q Deletion Syndrome is a rare condition and we believe there are only 12 other known cases of the condition with the oldest child only being 15 years old.
Our whole life has had to change now and Mum has had to give up work to become Bobby's full time carer.
We are now having to look at either moving house or having an extension to make adaptions for Bobby to help him try to live as normal a life as he possibly can.
Bobby is now 18 months old but still very much like a newborn, very floppy, can't support himself at all and is fed on a pump which is running 24 hours a day and feeds straight into his bowel. Bobby vomits and gags up to 20 times a day and through the night. He has a drainage bag connected at night and he has to have regular suction through the night to clear his vomits and secretions.
As Bobby is growing, he is becoming hard to carry up the stairs and around the house. This will only get harder and more dangerous as he gets bigger. Due to this, we are having to consider a stairlift or proper lift or even the prospect of having to move house.
We are looking to raise some funds for home adaptions and specialised equipment for Bobby. This is an ongoing project and we will be taking part in fund raising activities in the future, such as a cycle ride by Dad & Grandad from Poole Hospital to Southampton Hospital and back again. This is because Bobby has spent a lot of time in both hospitals and will continue to do so throughout his life.
Thank you so much for your support and helping us give Bobby a better life.
On 11th may 2013, we gave birth to our beautiful baby boy, Bobby.
On arrival, Bobby was motionless and very floppy. He was rushed out but returned soon after and we were told he was 'just a lazy boy'.
He wasn't feeding, bottle or breast, so we were syringing milk into his mouth. Mum and Bobby remained in hospital for 6 weeks in the paediatric intensive care unit while they ran extra tests.
We were later informed that little Bobby had Chromosome 14q Deletion Syndrome and Gastro Oesophageal Reflux Disorder (GORD). No one is able to tell us what the future holds for us and Bobby, but they have told us to expect Bobby to have learning difficulties and to be physically disabled although they are not able to say to what extreme.
Chromosome 14q Deletion Syndrome is a rare condition and we believe there are only 12 other known cases of the condition with the oldest child only being 15 years old.
Our whole life has had to change now and Mum has had to give up work to become Bobby's full time carer.
We are now having to look at either moving house or having an extension to make adaptions for Bobby to help him try to live as normal a life as he possibly can.
Bobby is now 18 months old but still very much like a newborn, very floppy, can't support himself at all and is fed on a pump which is running 24 hours a day and feeds straight into his bowel. Bobby vomits and gags up to 20 times a day and through the night. He has a drainage bag connected at night and he has to have regular suction through the night to clear his vomits and secretions.
As Bobby is growing, he is becoming hard to carry up the stairs and around the house. This will only get harder and more dangerous as he gets bigger. Due to this, we are having to consider a stairlift or proper lift or even the prospect of having to move house.
We are looking to raise some funds for home adaptions and specialised equipment for Bobby. This is an ongoing project and we will be taking part in fund raising activities in the future, such as a cycle ride by Dad & Grandad from Poole Hospital to Southampton Hospital and back again. This is because Bobby has spent a lot of time in both hospitals and will continue to do so throughout his life.
Thank you so much for your support and helping us give Bobby a better life.
Organizer
Jay Griffin
Organizer
