Local Girl Battling Rare Disease with the Help of Her Family and Community
Hattie Foster, a six-year-old girl from Kansas City, is fighting against a rare disease called SynGap 1, which poses numerous challenges for her daily life.
Despite the difficulties she faces, Hattie’s family is fighting alongside her, and they remain hopeful for a cure.
Hattie’s struggles began as a baby when she failed to meet developmental milestones and only began crawling at 13 months old.
Her parents knew something wasn’t right and sought answers.
Hattie was diagnosed with SynGap 1 before her fifth birthday, a disease caused by a single copy of a protein that doesn’t function properly, resulting in epilepsy, developmental delays, sleep issues, gastrointestinal problems, low muscle tone, and other challenges.
Hattie was also diagnosed with autism.
Currently, there is no cure for SynGap 1, and only 1,100 known cases exist worldwide, with approximately 300 in the United States.
Hattie’s family and community are coming together to spread awareness, raise funds for research, and provide support for Hattie and her family.
Hattie’s behaviors can be unpredictable, making it challenging for her family to go anywhere without anxiety.
However, they remain hopeful and will continue to fight for Hattie until they find a cure.
They have found solace in their community, which provides them with answers to their many struggles.
For more information on SynGap 1, visit the SynGap Research Fund website.
Hattie’s story reminds us that we are all in this together, and with hope and determination, anything is possible.