Didi living with Half a Brain
Donation protected
Didi is a young girl living with Rasmussen's Encephalitis. A rare debilitating neurological disease with chronic inflammation in one hemisphere of the brain and uncontrollable seizures. To stop the physical and mental deterioration Didi is experiencing she will need surgery. The only 'cure' is to remove half of her brain.
Her medical and theraputic costs and her upcoming surgery will be covered by our medical system. However we are looking at how to provide for her ongoing needs as she faces the challenges of rehabilitation and life at home as a one handed person, with limited vision and living and functioning with half a brain.
Didi will have ongoing issues with walking that will require special shoes as she grows to accomodate her orthotics.
Didi's eyes are suffering not only a left hemianopia but also eye drift that will need further attention.
Upgrading our home to accomodate limited vision, including removing tripping hazards and installing railings to enable Didi to walk the stairs confidently with one arm are initial needs.
In the future we see Didi could benefit from things like a one handed keyboard for the computer, a bike attachment for behind an adult's bike and even non slip items for helping with cooking. Anything that will aid her sense of and desire for independence.
We're hoping to raise enough money to help provide her the best opportunities to learn how to live 'abled' with her limitations. We believe that being active and experiencing life is one of the best rehabilitation tools and would like to take her on many outings, have her in a regular sport like gymnastics or dance and take a camping holiday as a family. Something we have been unable to do since her medical treatment began nearly two years ago.
Her medical and theraputic costs and her upcoming surgery will be covered by our medical system. However we are looking at how to provide for her ongoing needs as she faces the challenges of rehabilitation and life at home as a one handed person, with limited vision and living and functioning with half a brain.
Didi will have ongoing issues with walking that will require special shoes as she grows to accomodate her orthotics.
Didi's eyes are suffering not only a left hemianopia but also eye drift that will need further attention.
Upgrading our home to accomodate limited vision, including removing tripping hazards and installing railings to enable Didi to walk the stairs confidently with one arm are initial needs.
In the future we see Didi could benefit from things like a one handed keyboard for the computer, a bike attachment for behind an adult's bike and even non slip items for helping with cooking. Anything that will aid her sense of and desire for independence.
We're hoping to raise enough money to help provide her the best opportunities to learn how to live 'abled' with her limitations. We believe that being active and experiencing life is one of the best rehabilitation tools and would like to take her on many outings, have her in a regular sport like gymnastics or dance and take a camping holiday as a family. Something we have been unable to do since her medical treatment began nearly two years ago.
Organizer
Kellie Pownall
Organizer
Deptford VIC
