A Lyme love story

We haven't given up hope, but we really need your help.

Our children struggle with symptoms of Lyme disease, coinfections called Bartonella, Ehrlichia, Mycoplasma, Rocky Mountain Spotted Fever and Babesia (multiple tick borne illnesses), CIRS, mold and chemical toxicities and Pediatric Autoimmune Neurologic Encephalopathy associated with the Strep Germ (PANDAS). They were infected in utero, reinfected after, and are still struggling daily because the disease persisted beyond thirty days, beyond antibiotics, beyond anyone's expectations, and morphed into stronger infections as it attacked different organs. Their major organs such as brain, heart, lungs, thyroid, neurological and digestive systems are all impacted - causing sensory issues, psychological and behavioral difficulties, myalgic and joint pain, learning challenges, multiple toxicities, asthma, nausea, anxieties, profound fears, allergies, rashes, digestive issues, stabbing pains, drenching sweats, fatigue. Their tummies hurt, their bodies betray them in ways they can't understand. This disease persists in their bodies despite multiple aggressive treatments and alternative therapies over the years. Our kids take countless pills, suffer countless needles, bimonthly blood draws, hospital tests and repeated hospital visits. They have appointments at least three times per week. Our children are four and seven.

Because persistent Lyme disease is an 'invisible illness' in the medical world, our labs, scripts and medical expenses are not covered and because Lyme and Pediatric Encephalopathy are both specialized and seen by doctors out of network, we must travel far to find specialists who treat children who present such complex cases.

We have lost a lot in the battle to try to gain our children's health back, and we still mourn many nights as our kids struggle... wondering how we are going to get through the days ahead of us...

Right now, we are at the beginning of a new road ahead that we must travel with our kids, who have newly identified infections, autoimmune related disorders and hospital visits to come that must be addressed. We will do what we need to do to help our kids get better even as their bodies fight their own immune systems. Currently we have coordinated a team of specialists who are working together to support our children in the Northeast and our hopes are for remission within 12 months. Pictures below show the kids with one of their specialists in CT, our hero Dr. Jones. We always have hope - but we need help.  A small donation from you would mean so much to our family as we fight our children's medical battles.

Your donation will go to our children's medical care - uninsured doctor bills, co-pays, medicines and alternative therapies, travel. We chose the goal of $22,000 because that is what it cost us for medical expenses, out of pocket, last year. We spent $1409 alone in prescription copays under a really expensive health plan (low script co-pays). If you should choose to donate ANONYMOUSLY from this public forum, and want to use Paypal rather than GoFundMe, you may donate directly via Paypal to our children's account at D[email redacted].

To learn more about us, Lyme disease and it's implications, view updates here or my FB page What's the Big Deal About Lyme. Thank you for your kindness.

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Donations

  • Steve Katsos 
    • $100 
    • 11 mos
  • Charlene Spaulding 
    • $80 
    • 42 mos
  • Jaime Kelly 
    • $50 
    • 42 mos
  • Theodore Speros 
    • $200 
    • 42 mos
  • Colene Elliott 
    • $100 
    • 42 mos
See all

Organizer

Thaia Lukeandlexsmom 
Organizer
Danville, NH
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