Stories of Hope: Testimonials

              Our Story: How the NELAD Foundation Changed Our Lives

From the moment Mary reached out to us, she became a lifeline. She didn’t just offer a grant… she offered hope. At a time when we felt overwhelmed, unseen, and unsure how we would continue providing the care our daughter Gianna so desperately needed, the NELAD Foundation stepped in. We suddenly didn’t feel so alone.

Our daughter Gianna, now four and a half, was diagnosed with chronic Lyme disease in May 2024. From birth, we knew something was wrong… she missed milestone after milestone, struggled with motor planning, had constant illness, extreme sensory sensitivities, minimal speech, and ongoing gut issues. We searched tirelessly for answers and finally connected with Lyme-literate providers, including Dr.##### and later Dr.######. The cost, however, was crushing… most of Gianna’s care is out of pocket, and we were barely making ends meet.

We were doing everything we could… my husband working multiple jobs, me stepping away from my nursing career to care for Gianna full-time… but it was never enough. When Mary told us we had been approved for grant assistance for Gianna’s treatment, it lifted an enormous weight off our shoulders.

That funding allowed us to move forward with Dr. #####, who focused on the neurological impacts of Lyme disease on Gianna’s developing brain. I could cry thinking about what happened next… Gianna began conversational speaking. Not just one-word requests, but back-and-forth conversations. The very thing I had prayed for night after night was unfolding before my eyes. To be able to sit in the car and have a real conversation with my daughter… it still feels like a miracle. That kind of breakthrough wouldn’t have happened without the support from the NELAD Foundation. It came at exactly the right time.

This foundation didn’t just help our daughter… they helped me too. For years, I’ve ignored my own chronic Lyme symptoms… brain fog, joint pain, fatigue, heart palpitations, and more. I kept pushing it off because I didn’t think I could take anything away from Gianna’s care. But with Mary’s encouragement, and the foundation’s recent grant approval for my own treatment, I’m finally taking that step. I’ve scheduled with Dr. ##### to begin my own healing, and I no longer feel selfish doing so. I know I need to be well to care for my children… especially Gianna, who still depends on me for every aspect of her recovery.

We’ve also faced serious environmental challenges… our previous home was contaminated with toxic mold, and we had to make the devastating decision to leave nearly all of our belongings behind and relocate to Florida. We’ve downsized to a small apartment, prioritizing health and healing over everything else. And through all of this, Mary has continued to check in. She has made us feel like family.

We are just one family, but I hope our story shows what a difference your foundation makes. The NELAD Foundation gave us more than financial help… they gave us light in one of the darkest chapters of our lives. The generosity of your donors has directly impacted our daughter’s speech, our family’s healing, and my ability to get the care I’ve long needed.

From the bottom of our hearts, thank you. You are changing lives… ours included.

With deep gratitude,

Kristi and family

                             Eiley’s Lyme Saga-and a story of Helpers and HOPE 

                                             By Mom, Janice, written in July, 2025

“The wonderful family of NELAD is soulfully dedicated to educating and assisting those of us who are desperate for help.  They are a wealth of knowledge and hearts full of caring.” 

     The reason why I am calling Eiley’s story a saga, is that it is truly worthy of a ho.    rror trilogy.  It began when she was just was just thirteen years of age. A beautiful young girl with the world as her oyster.  She had it all, kindness, brains, a witty sense of humor, and a beautiful little smile, until she didn’t.  She became very ill, starting with a constant headache, grey pallor, a cardiac murmur, nausea, and a low -grade temp. We searched 5 different states in order to find answers, begging doctors to help my daughter.  She became too compromised to attend 8th grade, and I was simply horrified.  

Alone, fighting for her health, she worsened as infection induced autoimmune, encephalopathy took over her growing brain. But we were not lucky enough to have qualified medical help to diagnose her properly, so she suffered approximately one full year of “Lyme denials” from approximately, 30 doctors! Each specialist gave her a different diagnosis, ranging from ‘Factitious Disorder’ to chronic daily headaches, autism, and ‘Oppositional Defiance Disorder.’  How did this well-adjusted, “A” student, all of a sudden present in this way? 

At each doctor’s appointment, I suggested my suspicion that she may have Lyme disease, only to be met with one more egregious answer to the next.  Things were said like, “We don’t have Lyme Disease” in North Carolina, where we were living. (What? My  own neighbor said his uncle had it here.) There were ticks everywhere on our horse, in our field, and in the woods, behind our house.  When returning back to the New England area, in Boston, the doctor told us that that Eiley had ‘chronic daily headaches.’ (which is what we had just told him!) He offered no etiology for this non-diagnosis. He also negated her positive IGeneX Labs test from a Rhode Island Hospital. Frantic and desperate but not giving up, I was given a misdiagnosis of ‘Munchausen’s By Proxy!’: a rare disorder of a mother, who allegedly, abuses her daughter by hurting her and fabricating illnesses.  Why couldn’t they see that I was a normal, educated woman – and a registered nurse -- who adored my very ill daughter?  

After a decade of bad medical experiences and misdiagnoses, we moved to Rhode Island and luckily were able to treat nearby, in Connecticut with a Lyme Child Specialist – the late Dr. Charles Ray Jones.  He was brilliant and kind. Along with wonderful, angelic helpers along the way-they have saved my daughter and I.  These helpers include a Lyme Literate RI, Nurse Practitioner and NELAD Resource Foundation. They have greatly assisted Eiley by connecting with (and NELAD funding) an expert physician in autoimmune dysfunction, which unfortunately is triggered by the Tickborne infections. Eiley has gone from not being able to attend most of High School, to now just graduating with her Master’s in Social Work Degree.  We would not be here without these amazing helpers.  The wonderful family of NELAD is soulfully dedicated to educating and assisting those of us who are desperate for help.  They are a wealth of knowledge and hearts full of caring.  They could choose to do anything with their lives, and yet they focus on helping others with Tickborne Illnesses.  And we are grateful for all of them and their dedication.

***Update on Eiley from NELAD: Eiley has completed her degree, and is working full-time as a social worker.  She is expecting her first child this Spring!!