Bailey & Oakleys Journey
Donation protected
Bailey and Oakley are two brothers, my eldest son and my fourth son, who appear completely normal on the surface. This year however, Bailey was diagnosed with Duchenne Muscular Dystrophy. This rare condition affects predominantly males and is a genetic muscle wasting disorder, that dramatically effects mobility which will eventually necessitate a wheel chair and other mobility aids to get around. Further to this it carries a significant lower lifespan to those who live with it, with optimistic forecasts around mid 20's to early 30's.
It is a genetic condition that is passed on via the mother; it is carried on the X chromosome and is either a random mutation, or runs in the family. There is no prior family history of the condition in my family, but as their mother it has been confirmed that I carry the gene. As such, I am now classified as a carrier, and there is a 50/50 chance of my passing it on. I have four sons, and two have Duchenne. As yet we have not tested our daughter and she too could potentially be a genetic carrier.
Bailey's diagnosis came after a great many years of my searching for answers, and in spite of relentless searching it was not until Bailey was 10 that we received this heart breaking diagnosis. Further to our eldest son Bailey having this condition we have since discovered that our youngest son Oakley (3) also has it.
Bailey has has an absolute thirst for knowledge and travel. We have a few special things we would like to do with him before his condition takes away his ability to walk without mobility aids. Bailey has some family interstate and internationally he would love to visit as a whole family with his brothers and sister. He also wants to see some of the natural beauty and nature based experiences off grid that his home state of WA has to offer. Some of these experiences he wants to try would be impossible for him to do so whith the restraints of certain aids he will need moving forward so time is of the essence. Ideally we hope to achieve his wish list within 12 months based on a recent projection of his condition.
We are currently organising some of these wishes, so far a trip to Sydney to meet their 94 year old great grandfather and family have been organised. Bailey expressed a wish to go on a sailing boat, ride a helicopter and progress can be followed on his soon to be completed instagram account.
Should we we be so fortunate to be able to grant these wishes for Bailey and Oakley, any excess funds would be donated to the Muscular Dystrophy Association so they can continue their invaluable work to fund new research, trials and events that enriches the lives of all those affected with this condition.
A story about Baileys Journey was recently published on the Facebook and online magazine Kidspot which you are welcome to review. Here is the link:
http://www.kidspot.com.au/health/disorders/bones-muscles-and-joints/im-a-mum-im-supposed-to-be-able-to-fix-everything-for-them
It is a genetic condition that is passed on via the mother; it is carried on the X chromosome and is either a random mutation, or runs in the family. There is no prior family history of the condition in my family, but as their mother it has been confirmed that I carry the gene. As such, I am now classified as a carrier, and there is a 50/50 chance of my passing it on. I have four sons, and two have Duchenne. As yet we have not tested our daughter and she too could potentially be a genetic carrier.
Bailey's diagnosis came after a great many years of my searching for answers, and in spite of relentless searching it was not until Bailey was 10 that we received this heart breaking diagnosis. Further to our eldest son Bailey having this condition we have since discovered that our youngest son Oakley (3) also has it.
Bailey has has an absolute thirst for knowledge and travel. We have a few special things we would like to do with him before his condition takes away his ability to walk without mobility aids. Bailey has some family interstate and internationally he would love to visit as a whole family with his brothers and sister. He also wants to see some of the natural beauty and nature based experiences off grid that his home state of WA has to offer. Some of these experiences he wants to try would be impossible for him to do so whith the restraints of certain aids he will need moving forward so time is of the essence. Ideally we hope to achieve his wish list within 12 months based on a recent projection of his condition.
We are currently organising some of these wishes, so far a trip to Sydney to meet their 94 year old great grandfather and family have been organised. Bailey expressed a wish to go on a sailing boat, ride a helicopter and progress can be followed on his soon to be completed instagram account.
Should we we be so fortunate to be able to grant these wishes for Bailey and Oakley, any excess funds would be donated to the Muscular Dystrophy Association so they can continue their invaluable work to fund new research, trials and events that enriches the lives of all those affected with this condition.
A story about Baileys Journey was recently published on the Facebook and online magazine Kidspot which you are welcome to review. Here is the link:
http://www.kidspot.com.au/health/disorders/bones-muscles-and-joints/im-a-mum-im-supposed-to-be-able-to-fix-everything-for-them
Organizer
Amanda Atkinson
Organizer
Butler WA
