Allison Carey Needs Life-Saving Treatment for MCAS

Hi,

My name is Jeff LaFleche. My partner, Allison Carey, had her life changed in almost every way since ambulance transport to the ER for an undiagnosed stroke-like event that occurred on December 27, 2022.

Before this event she had just recently purchased her dream home in downtown Northampton, MA. She was running a successful psychotherapy group practice while simultaneously starting a second business coaching corporate clients to enhance their emotional intelligence and company culture, dedicating her entire career to helping others. She did this while in her free time enjoying vigorous physical activities such as going on hikes together and having taken kickboxing for 5 years. She had a very active social life with many close friends and tight family connections. Social events were an almost every day occurrence and one of the greatest sources of joy in her life.

After the December event she began having seizure-like events, struggling to stay conscious often. Her doctor told her, with valid reasoning, that she should not be left alone due to the severity of symptoms and associated safety risks. Because of this she's not been able to live in her dream home that she worked so hard to obtain and has moved in with me so I could become her caretaker for many reasons: administering emergency epinephrine when she's not able to self-administer, her inability to complete basic tasks (cooking, cleaning, sometimes walking), and constant help trying to get the care she needs.

She became bedridden for weeks and started to experience many new and severe symptoms: recurring life-threatening anaphylaxis, burning flushing of the skin, daily tachycardia (sometimes 175 bpm at rest), severe GI pain after any solid food, migraines, burning hives, painful blurry vision, tinnitus, severe neurological issues, and more

In February I took her to the ER for anaphylaxis. The doctor there refused to treat her, telling her to go home. We waited until her symptoms were so severe that her face, neck, and chest were covered in hives, her throat closed so much she could no longer speak and could not hold her own body up. She finally received epinephrine but because it was administered so late she was admitted to the ICU and required multiple rounds of epinephrine followed by a hospitalization that was very traumatic for Allison due to staff’s complete lack of knowledge regarding her complex illness, even going so far as to not administer epinephrine during active anaphylaxis.

After being released Allison was incredibly weak, experienced anaphylaxis 2-3 times each week and saw dozens of specialists searching for answers. Despite this tremendous effort, she still never received a primary diagnosis nor a treatment plan from any doctor. She continues to be completely disabled today.

Due to undiagnosed neurological issues and an inability to look at screens she's had to halt her career entirely. After spending 15 years building a psychotherapy group practice and 1 year starting her second business, she needed to suddenly stop seeing clients for therapy and coaching, some of whom she's known and worked with for more than 10 years.

She's had to give up her dog, Winnie, who she loves dearly, due to her inability to care for him and I've taken over care for her cat, Cece. There are many days she tells me that she feels like she has lost everything.

Due to the tachycardia, fatigue, temperature dysregulation and shortness of breath, she's extremely physically limited. After once attending kickboxing training routinely, she's now often unable to walk up a single set of stairs at a normal speed and often requires an inhaler to do so. Activities like hikes, tai chi, and walks around downtown are no longer within her ability.

Socializing with friends or family is now exceptionally rare. One of the greatest joys in her life is lost. Gatherings with family or friends, birthdays, and holidays are all events that she's had to miss due to her physical limitations. She's also missed the birth of her grand-nephew, Evan, and was not able to meet him for months. As an individual with a strong family bond, missing all of his early development months has been heart-breaking.

Though absolutely none of her physical symptoms have a psychological cause, all of this has taken a significant mental toll to completely lose the life that she'd worked so hard to build. After much research and conversations with her current PCP, we have identified the team of highly specialized doctors that can properly diagnose and treat her. This specialized team of collaborative doctors at the AIM Center for Personalized Medicine, The Center for Complex Neurology, and ChiroPro Performance Center all provide highly unique care with incredibly in-depth knowledge in their corresponding specialty areas in rare illness.

Devastatingly, her insurance company has denied all requests to see these specialized doctors, complete necessary tests, obtain accurate diagnoses, and begin treatment for these daily and life-threatening symptoms. This is despite a year of in-network hospitals and specialists making no progress on the state of her health and in many cases further exacerbating symptoms. We will need to pay out of pocket for all visits, testing, treatments, and accommodations for traveling to distant and specialized medical centers that are necessary to treat her rare and complex cases of mast cell activation syndrome, dysautonomia, high likelihood of REM sleep behavior disorder (most often linked to neurodegenerative disease), connective tissue disorder, and completely undiagnosed severe neurological symptoms. Just two visits at the AIM Center for Personalized Medicine with associated initial testing is a $14,000 cost.

Our hope in recovering from these debilitating illnesses hinges on seeing these providers. We feel as if we have wasted a year of our lives going from specialist to specialist, continually getting conflicting information and there is still no unifying diagnosis or treatment plan.

She requires help urgently, and cannot continue to live in a state where she cannot work, live in her home, socialize, or engage in the activities that bring her joy, and is at constant risk of an anaphylactic event that could take her life. We believe she has the potential to heal - and that these providers will get her on the path to healing. Otherwise, she is not left with a sense of hope and fears her health will continue to decline. She desperately wants to regain some sense of normalcy.

Any amount of help you can provide is so greatly appreciated and will be put directly towards helping her return to health and obtaining necessary treatment.

Thank you so so so much,

Jeff LaFleche

Update #1

We can't thank everyone enough for this initial round of donations. Family and friends from all over the country have come together to support Allison's recovery. We've been in Acton, MA all week receiving treatment at ChiroPro Performance Center and in just a few days we've been able to gather enough from your support to pay for the week's treatment.

In addition to the support we've received here through GoFundMe, we've also received a more than generous donation from Allison's parents, Dan and Mary Jane, of $10,000! Additional thoughtful and considerable offline donations have come in from her cousins Greg and Jennifer, her Aunt Judy, and dear friend Jennifer Simpson who has also committed countless hours to us to help advocate for Allison's healthcare.

As long and stressful of a process as this has been you have all helped it be a little easier.

Thank you so much,

Jeff LaFleche