Lynne's Quest for a Cure

Hi, my name is Adrian, and I’m hoping to raise money to help my mom, Lynne Johnson, afford her very needed medical treatment.

Since 2014, my mom has suffered from severe headaches, hearing loss, and numerous other (often debilitating) symptoms. It wasn’t until 2017 that she and her doctors finally found a diagnosis – a CSF leak. CSF stands for “cerebrospinal fluid”, a.k.a. “brain fluid”... basically the stuff that your brain floats in, cushioning it from bouncing around in your skull. As you might imagine, having that stuff leaking is… not good. As her symptoms worsened, my mom went from being an active, self-sufficient person to someone unable to work, unable to engage in hobbies, sometimes even unable to sit upright for more than a few hours at a time. Very often, the only thing that can alleviate the pain of her headaches is lying flat for hours with ice packs on her neck and forehead, along with very strong medications.

As most of you no doubt know, she still continued to try to participate in the New Hampshire Renaissance Faire as director of volunteers, but her health forced her to do so in an increasingly limited capacity, and she was often unable to even be on site during Faire days.

There are only a few doctors and teams in the US that have any expertise addressing CSF leaks, and not only does each one have their own approach to diagnosis and treatment, the medical community’s general understanding of CSF leaks has been a relatively recent development, and is constantly evolving and improving, even in the time since my mom’s diagnosis in 2017. She has undergone 16 invasive procedures (and countless regular MRIs and CTs) which have required travel to Los Angeles (3 times), Denver (3 times), and back to Boston (9 times).

But that constantly evolving understanding of CSF leaks has led the team at the Mayo Clinic in Minnesota to make several incredible advances in both imaging and less-invasive treatment. That’s where my mom is headed this August! We are hopeful that this trip may lead to a better understanding of her CSF leak, and – just maybe – a cure for it.

Unfortunately, between this illness keeping her out of work and her treatment requiring so much travel and so many procedures, her life savings is now gone, and she’s scrambling to make sure she can afford this trip.

I have set the goal at $7,000, which will help to cover the cost of the medical expense, travel, food, and lodging for this trip to Minnesota.

Thank you, dear reader, for any help you can provide – whether that’s a donation or just a share!

If you want to learn more about my mom’s journey, friends can find her posts on her Facebook page. For general information about CSF leaks, check out https://spinalcsfleak.org/