Delaney’s Journey

       As a lot of you may already know, Delaney ended up in a wheelchair as paralysis crept in from the waist down due to Lyme disease and co-infections ten years ago. From the age of 9, Delaney has been fighting to get her life back to any sort of normalcy and free from the myriad of symptoms that continue to plague her to this day. For the last decade her mother, Kristine, has searched and researched tirelessly to get her healthy again. From Boston, Connecticut, New York, New Hampshire, and Austin Texas, my sister-in-law has traveled to countless institutions and found Lyme literate doctors looking for treatments and answers. While Delaney is walking again after having gone through rigorous PT, many medications, and various treatment plans, she is still left with peripheral neuropathy and lingering neuro-Lyme exacerbating deficits that wax and wane.

She is currently only tolerating most of her hydration and nutrition via a feeding tube
since her chronic Lyme triggered MCAS
and CIRS (Mast Cell Activation Syndrome
and Chronic Inflammatory Response Syndrome.) Both affect multiple systems in the body, all of which inhibit her from functioning at a level in which she can live a fulfilling life.

Kristine and Delaney are now traveling to NY once a month for IVIG and SOT treatments in the hopes that this will finally bring Delaney relief of the debilitating symptoms and eradicate the many infections she is so unfortunate to have been saddled with for most of her childhood. Dr. Elena Frid, who is a neurologist specializing in Lyme and autoimmune disease, was the one who finally got Delaney out of her wheelchair with no crutch after years of having to use one. These monthly trips to NYC have forced Kristine to be on her fourth Family Medical Leave Act (some of which is unpaid).
Delaney has had far too many hospitalizations, invasive procedures, imaging, been forced to learn how to walk again three times and has missed many of life’s milestones such as high school graduation that we all take for granted. To say this is heartbreaking to stand by and watch is an understatement. Not only is it so very sad that so much time has passed her by, and she has been deprived of her childhood, but the added salt in the wound is the fact that most of this cost is out of pocket for Kristine, both the necessary travel and many of the procedures are not being covered by insurance.

At this point, there seems to be no end in sight.  
         Delaney has a younger brother and sister who also have congenital Lyme and co-infections. Dylan and Devyn have had their share of symptoms and struggles but because of all that Kristine has learned throughout the years they are thriving. Both of them are being treated by an amazing PANS/PANDAS homeopathic practice out of California. This too is out of pocket, but well worth the time, effort, and money because it's keeping their immune systems in check and operating in a healthy way to fight the infections. Delaney's immune system, unfortunately, couldn’t do that, therefore it is still fighting against her own body. Lyme disease and mold toxins have weakened her body's immune system and created a breeding ground for other life-threatening illnesses, some of which block treatments that are critically needed for healing completely. This has made her medical journey extremely complicated and challenging for her to get better. It's been an endless spiral of fear, hope, and disappointments.

     While it breaks our family's heart to not see Delaney happy and healthy, we hope we can ease a little bit of their financial burden that has accumulated over the last decade. We really appreciate any support you can give, and our biggest wish is that one day we are able to say that "Delaney is cured."