"Smart, poignant, candid... It's a really extraordinary film."
- Graham Leggat, Executive DirectorSan Francisco Film Society
SYNOPSIS • DIRECTOR'S STATEMENT • CREDITS • FAQs • UPDATE
What does Gannet “have”?
When filming began, Gannet had no diagnosis. We now know that Gannet has a rare genetic condition called Mowat-Wilson syndrome.
What causes Mowat-Wilson syndrome (MWS)?
MWS is caused by a mutation or absence of a particular gene located on chromosome 2, which produces a protein that regulates the action of other genes, many of which are involved in development.
What are the symptoms of Mowat-Wilson syndrome (MWS)?
People with MWS often have moderate to severe intellectual disabilities, delayed or absent speech, seizures, and congenital heart disease. Motor milestones are always very delayed. In some cases, like Gannet’s, people with MWS are missing part or all of the corpus callosum, the structure connecting the left and right hemispheres of the brain. Gannet is also among the approximately 60% of people with MWS who have Hirschsprung’s disease, a disease of the colon causing bowel obstruction or severe constipation. People with MWS also have characteristic facial features, including a prominent narrow chin, wide set eyes, and a broad nasal bridge.
How is Mowat-Wilson syndrome (MWS) treated?
Treatment of MWS is directed toward the specific symptoms each individual has. Such treatment may require the coordinated efforts of a team of medical professionals, including genetic counselors, orthopedics specialists, physical therapists, occupational therapists, and speech therapists, among others.
Where did Amy, Gannet’s mom, meet these caregivers?
Amy first met Colter at the Enchanted Hills camp for the blind and visually impaired. It was through Colter that Donal, and later Amanda, got involved in caring for Gannet.
How is Gannet’s care funded?
Casa Allegra Community Services manages Gannet’s supported living needs and Toolworks runs his day program. California’s Golden Gate Regional Center (GGRC), part of a statewide, publicly funded system, provides most of the money for the caregivers. GGRC funds Casa Allegra and Toolworks, which in turn pay Gannet’s caregivers. In Home Support Services (IHSS) pays for the overnight care provided by his two live-in caregivers, in addition to personal assistant hours during the weekend (a total of 280 hours per month). IHSS pays the caregivers for personal assistance and safety services, including his cooking, cleaning and laundry. Primary medical benefits are provided through his mother’s private pay health insurance plan, and supplemented by state medical coverage. In addition to these resources, Gannet has finally been approved for a Section 8 housing voucher, which subsidizes up to $2400/mo. for rent on a three-bedroom apartment (which is well below market rate in San Francisco.)
