Help Pastor Paul Reid

Paul was always a very active, athletic man and a type A go-getter. About 25 years ago, he had an MRI that showed bilateral calcification in his brain. There was no follow-up, as he had no symptoms. Three years ago, he began to experience paresthesia - primarily in his arms and legs. It was mild at first, more of an annoyance. However, it increased in severity and area (even his tongue, forehead, and torso were involved). Then, he began to have other symptoms - strange goosebumps, itching, hives, headaches, pain, and numbness. A local neur-radiologist said his MRI looked like he had Fahr's disease, but that his symptoms weren't typical for it. We went to many, many doctors looking for answers. After a journey of about 3 very frustrating years we found out, through the friend of a friend, about the undiagnosed disease program at the National Institutes of Health. Paul was accepted into the program and they did a thorough workup of him, ruling out virtually everything (including depression and anxiety). They also completely sequenced his genome - that's when the found the mutation for Fahr's. His mutation is at SLC20A2, the most common site. Fahr's is extremely rare, affecting less than 1/1,000,000 people.

Paul is unusual in that we know of no family history of Fahr's and he is experiencing more pain than most people with the disease.

Today, Paul has trouble walking. His pain level is often to the point that he's very uncomfortable. As it's not his pain sensors that are telling him he has pain, but the way his brain is being affected, it's been difficult to find effective pain relief. He has balance issues, he's lost a lot of weight, his temperature control is often off, he's dizzy, has nearly continuous headaches, and can only walk about 50 feet before he needs to sit down. The doctors at the NIH feel that all these symptoms are due to Fahr's.

At this point, we're looking at purchasing a wheelchair van, a motorized wheelchair, and a new home (ours is not accessible for a disabled person, even with modifications). Our medical costs have also gone up a lot (we're in an HMO with large deductibles). In the future, he will probably need nursing care at home. That's where the go fund me page would come in. To help Paul move in our own home and have him be able to see the world outside and not have him confined to a few seats in the house.

Donations ()

  • James Levy 
    • $50 
    • 23 mos
  • Anne Ling 
    • $100 
    • 23 mos
  • Anonymous 
    • $100 
    • 24 mos
  • Anonymous 
    • $50 
    • 24 mos
  • Dariusz Kowalczyk  
    • $2,000 
    • 25 mos
See all

Organizer and beneficiary

Nancy Farrington Reid 
Organizer
Wayland, MA
John Reid 
Beneficiary
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