Support the Emmett Family

I never thought I’d have to write a post like this but here we are…

On March 25th, 2024, Billy was diagnosed as having a prion disease, people have often heard of CJD but not so much on his mutation - Fatal Familial Insomnia (FFI); an extremely rare, incurable, neurodegenerative prion disease. The disease sits dormant essentially until it is ‘triggered.” We been given confirmation indicating Billy’s disease has been triggered.

Once the disease triggers, the body starts mass-producing mutated proteins which attack the sleep cortex of the brain, making restorative sleep a physical impossibility.

Without proper sleep the body can’t regenerate resulting in insomnia, loss of motor skills, memory loss, dementia and ultimately - death.

There is a brand new clinical trial that we are hoping to get him in. We are waiting on the results of a screening appointment we had recently (with the participating research team) where he got the required testing and evals for the committee who decides if he qualifies based on what they need. We are told it will take 4-6 weeks to hear. That should be mid June I believe.

This is in addition to his Dx of epilepsy which he developed after a workplace neurotoxic pesticide exposure in September of 2023. His seizures are not controlled after 5 months on meds (his neuro added a second medication) so I’m not sure what the plan will be. He has daytime (focal & absence) and nighttime monoclonal seizures which exhaust him and cause debilitating headaches and exhaustion.

If you’re still wondering how rare that triggered gene is…it’s like one in 10 million. Only a handful of people who are in the states and a few family pockets around the world. I believe recent estimates put the number of families somewhere between 50-100 worldwide.

Please help our family navigate this incredibly challenging time and support Billy, Natasha, & their children, in what has been and will continue to be, the hardest times of their lives.

Any funds raised here will go towards:

SHORT TERM GOALS

Providing Billy the best health-care we can; medical equipment, private nursing staff to assist with overnight care, medication costs, specialist Doctor appointments, alternative therapies, counseling and end of life care.

Helping to support his family financially during this period of loss of income. Natasha is understandably unable to work as she helps care for Billy and she has been on leave without pay for months.

Helping to create memories for Billy, Natasha, Vito, Lennox, and Scarlett together as a family.

Offset travel expenses to assist with Billy participating in a clinical research trial that is located in Los Angeles. (Some expenses are covered or eligible for reimbursement we are told)

LONG TERM GOALS

Supporting Natasha with Lennox & Scarlett; assisting her with the mortgage and living expenses, as well as parenting costs, school fees etc.

Help raise awareness and fundraise for FFI research and other prion diseases

While there’s no amount of money that will ever ease this nightmare, by helping to alleviate some of the financial pressures it will mean we can focus on what’s important right now, which is spending quality-time together as a family.

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Any contribution for my brother-in-law and sister’s family - as well as sharing this fundraiser with your networks (please please share) - it is so appreciated!

Thank you in advance for anything you can give, it means the world to this family.