By Mary Lorusso-DiBara 

No one could have imagined thirteen years ago that our family would start Northeast Lyme and Associated Diseases Resource Foundation (NELAD.org).

This non-profit provides education, advocacy and critical financial support for adults and children who cannot afford proper testing and treatment.

But here we are – an entire family – siblings and many of our children – who have endured the long, grueling, painful journey with Lyme and co-infections.

We are among the “lucky ones” who got the help we needed, and because of these reasons, we have pledged to help others on their journey of healing, while providing hope and support.

Our story: an entire family and a painful journey

Thirteen years ago, Darlene was the first to be diagnosed after many years of extreme and debilitating  symptoms. In her desperate three-year quest for answers, she was met with “non-answers,” inconclusive tests, and gaslighting by the very practitioners who were supposed to be helping her. We now know that, sadly, this is the norm, especially for those of us who are chronic.

How did we find help? Pure luck: a friend from church recommended a great doctor who had saved her friend’s life. By the time we got to this doctor, Darlene had been told that she probably had ALS, along with many other frightening diagnoses. We were terrified.

Darlene asked if I would take care of her two ill sons, because she was certain that she was going to die soon. This couldn’t be happening to my baby sister!

On our first appointment with this ILADS doctor, we were told that of the more than 20,000 patients he had treated, Darlene had the longest list of symptoms he had seen. Her blatant manifestations “screamed Lyme disease!” It is a contest that you never want to win.

Shortly after, it was a tsunami of information coupled with courses of treatments and having to keep a precise log of it all.  As we learned more, we felt like we were hit on the head with a hammer, and came to realize that life would never again be the same for our family.

More family members

Darlene’s epiphany diagnosis led us to question and to get help for the many unexplained and serious conditions that other family members, including me, our other three siblings, and their children had.

Based on family history and testing, we also discovered that our mother who had exhibited documented Bartonella psychiatric symptoms, most likely passed  infection(s) to us, which were then passed on to some of our children.

With these underlying infections, the stage was set for us to become very ill from additional and new vector-borne infections that seemed to “run in our family.” One by one, we were diagnosed, received treatment, and became markedly better.

But for one of us, it was too late. Matthew, our 63-year-old brother, died almost two years ago from an aggressive form of Alzheimer’s/dementia, which was brought on by his vector-borne illnesses.

A new path born of tragedy

Tick-borne and other vector-borne illnesses nearly decimated our whole family, but it also led us on a new path. It’s still surreal to me that we’ve gone from being a big, boisterous, fun-loving Italian-American family to this: a poster child for multi-generational, gestational Lyme+, including Bartonella. (Ironically, it sounds like an Italian song, but it’s not.)

We sometimes call ourselves the “DiBartonella Family.” Humor in the face of tragedy can help us through the darkness. But there is something more important: Hope.

For more than a decade, Darlene and I have worked individually and with great organizations like Central Mass Lyme Foundation to advocate and educate others, amid a sea of dangerous and sometimes deadly misinformation.

Inspired by this work in the trenches, and our own family’s experience, we knew the importance of education and advocacy. But we also had the stark realization that this falls short if people can’t access testing, practitioners and resources they need and deserve. All of these are required to get well.

As time went on, for us, it felt like we were dangling hope in front of people who couldn’t afford the assistance we talked about. Just as it shouldn’t be a matter of luck to get help, it shouldn’t be a matter of financial means for people to get proper care.

If people cannot access and afford care, they will become victims of medical and insurance systems that doom people to disability, psychiatric issues, complications and even premature death like that of our brother Matthew.

NELAD:  A bridge to hope

By giving financial aid to adults and children of all ages, NELAD bridges the gap between education, advocacy and access. In two years, we have given out more than $125,000.

Most of the people who seek our help are really ill and have been ill for a long time – even decades. We see mothers who are sick themselves trying to take care of their sick children.

Many of them have depleted their financial resources, are desperate, and holding on by a thread. Many face cognitive impairment and anxiety as a result of their illnesses and so we try to “hold their hands” when they contact us, have questions, and apply for financial support.

We also have designed a pretty simple application form to make it easier to apply. Numerous people we help on a daily basis simply want to talk with an entire family “who gets it,” and who they believe can guide them through the uncharted waters they face.

The bridge to hope has all of these components: Resources plus Education & Guidance plus Compassion & Empathy = Positive Outcomes.

Our logo expresses our mission and direction

From the start, we have been laser-focused on our mission to prevent or alleviate the suffering that our family has experienced, by helping people with all aspects that prevent them from getting help. The compass in our logo symbolizes that focus and clear direction.

But the bridge to healing and hope involves more than money. The two hands in our logo represent our commitment to help people navigate through uncharted, overwhelming, and frightening territory.

The Lyme ribbon on those extended hands signifies our work as strong and effective advocates. The heart on the hands represents empathy and compassion needed to truly support people during their difficult journeys.

Many days, we are overwhelmed by the magnitude of suffering, and the increasing numbers of people who seek our help. We know we need many more NELADs and the other wonderful organizations who are also doing this work.

So we work hard every day to get the resources to help more and more people, and work with other organizations to maximize resources. A drop in the ocean creates many ripples.

Opening a window

When we were children, we would hear our grandparents say things like, “God closes a door, but opens a window.” At that time, we had no idea what the heck they were talking about!  We do now…HOPE.

All of us connected with NELAD are hopeful despite the many challenges that we face both as individuals and with the “big picture” issues that led us to need places like NELAD in the first place.

We look forward to the day when people can get the help they need and deserve through established medical and insurance systems. Until then, we are here – and we are not going away! We invite you to work with us and share experiences, resources and ideas. We are all in this together, and there is much work to be done.

Click here to learn more about NELAD and how to apply for a treatment grant at their website.