Caring For River Ducky (River Barclay)
Donation protected
River Barclay suffers from CLN2 and Rare Disease that is uncommon and known as Batten Disease. It affects approximate 1 in 100,000 children born and estimated to affect between 300 and 500 children in the US. 1500 children in the world are estimated to have Batten disease. River was diagnosed on November 16th 2017. Batten/CLN2 presents itself as Intractable seizures, seizures resistant to medical treatments, as well as sudden worsening of vision. It is a genetic degenerative disease that ultimately claims the lives of children between their ages of 8 and 12 years.
Batten/CLN2 is a particularly rough disease on children. Children grow and develop normally until their first seizure. Seizures happen between the child’s 2nd and 4th year of life. Shortly after developmental delays happen then rapid regression. Children with Batten/CLN2 regress their previously gained developmental skills including talking, walking, feeding themselves. They are returned to diapers as their excretory systems and bathroom habits regress. Eating ability and complete vision loss are taken later from the child and childhood dementia sets in. Ultimately children perish from the loss of their basic infantile abilities of breathing or cardiac failure. More commonly respiratory infections and failure take their lives.
The evening of March 17th 2014 River suffered her first Tonic Clonic (Grand Mal) seizure. Seizure control either pharmaceutically or with the use alternative medications provided short lived seizure control. River regressed with her abilities and was removed from schooling during her 2nd year. Her deterioration has left her 100% dependent and recently underwent surgery for a G-Tube for medication, nutrition and hydration. This surgery rapidly regressed the little bits of personality we could coax from her. She soon will be placed on hospice for her end of life.
We ask asking if possible for help.
With the duration and regression of our daughter we have struggled to maintain the costs of her medications, equipment and care. Now with the additional costs we are unable to maintain and struggle even with her basic quality of life. And with an uncertain regression rate for our daughter we are asking family, friend and her extended communities to help us care for her.
If you have any ability and can donate the funds will be used for River, her medical, quality of life and end of life needs.
Thank you for your considerations and help.
Batten/CLN2 is a particularly rough disease on children. Children grow and develop normally until their first seizure. Seizures happen between the child’s 2nd and 4th year of life. Shortly after developmental delays happen then rapid regression. Children with Batten/CLN2 regress their previously gained developmental skills including talking, walking, feeding themselves. They are returned to diapers as their excretory systems and bathroom habits regress. Eating ability and complete vision loss are taken later from the child and childhood dementia sets in. Ultimately children perish from the loss of their basic infantile abilities of breathing or cardiac failure. More commonly respiratory infections and failure take their lives.
The evening of March 17th 2014 River suffered her first Tonic Clonic (Grand Mal) seizure. Seizure control either pharmaceutically or with the use alternative medications provided short lived seizure control. River regressed with her abilities and was removed from schooling during her 2nd year. Her deterioration has left her 100% dependent and recently underwent surgery for a G-Tube for medication, nutrition and hydration. This surgery rapidly regressed the little bits of personality we could coax from her. She soon will be placed on hospice for her end of life.
We ask asking if possible for help.
With the duration and regression of our daughter we have struggled to maintain the costs of her medications, equipment and care. Now with the additional costs we are unable to maintain and struggle even with her basic quality of life. And with an uncertain regression rate for our daughter we are asking family, friend and her extended communities to help us care for her.
If you have any ability and can donate the funds will be used for River, her medical, quality of life and end of life needs.
Thank you for your considerations and help.
Organizer
John Barclay
Organizer
Aberdeen, WA
