Jameson Journey to CHOP
Donation protected
Jameson is Victor and Tina's miracle-baby they thought they'd never have, and when she was born, they were over the moon. As was I, her auntie and Godmother! Months later, they noticed their beautiful baby girl hadn't met her milestones like rolling over and babbling. Within the year, Jameson wasn't crawling or talking, and Victor and Tina began pouring all they had into understanding what made Jameson so unique. They sought out specialists who could tell them why their precious girl wasn't matching her peers in growth and development. Being in the SF Bay Area, San Jose, all assumed this wouldn’t be hard to do. Jameson went from doctor to doctor before finally finding an amazing team at Stanford who fought for answers.
For those who don’t know, trying to find care for a child who has a rare diagnosis is extremely difficult. Thier insurance has denied the cost of her care and testing. Meaning families go deep into debt searching for answers. Some never find it.
May 10,2020 they got the call that they found a diagnosis. Jameson is a carrier of a rare genetic disorder called AP2M1. She is the fifth child to be diagnosed and the youngest. Since she was diagnosed during the pandemic Jameson has never been able to receive the care from the one hospital that has been researching AP2M1. Dr. Helbig from Childrens Hospital of Philadelphia discovered this genetic disorder and is eager to learn more about JJ and how they can help. Her symptoms range from 3 different types of epilepsy(drop,myclonic and abscent). She also has post ictal reactions to her seizures which are rare. AP2M1 causes not just seizures but global developmental delay(GDD), intellectual delay,ataxia and autistic behaviors. We want her to get the best available care and CHOP is the best place for her to receive it.While they don't know where this journey will take them, Victor and Tina hope to get some answers and the tools necessary to provide her with the opportunity to thrive. In spite of everything, Jameson is a determined, vibrant, affectionate child whose laughter fills a room with joy and greets the day and loved ones with a bright smile. And when she’s having an especially good day I get big hugs and kisses when I bring home her big sister after school on Fridays.
and with all the tests, doctor's visits and therapy that Jameson has required, the family is struggling to stay afloat. And that's where this GoFundMe comes in. My brother and his wife(also my best friend) are not the type of people who ask for handouts. After discussing GoFundMe with them I decided I would start one, with their approval, for my niece.Organizer
Marie Burrmann
Organizer
Campbell, CA