Maxwell and Riley Freed are twins who just celebrated their third birthday. Maxwell has a rare disease called SLC6A1. Sadly, this was a notable birthday because at 3, Maxwell will likely begin developing severe epileptic seizures.
There is currently no treatment for his condition. But that doesn’t mean people haven’t been working hard to uncover one.
The problem is, much research has stopped during the pandemic. Labs have shut their doors, and even the ones that are open are struggling to obtain the resources they need, such as mice for testing.
Maxwell was going to begin an experimental treatment this year. Now, his parents are worried it won’t happen. There are only 50 known people with the disease, so funding isn’t exactly a top priority. The family has done much of the fundraising for research themselves. This burden has now been exponentiated. The Freed family needs to raise 5.5 more million dollars and their next fundraiser, a golf tournament, has been canceled. They can’t get their money back from the labs they’ve paid, and they can’t move to a private lab, as its much more expensive.