Some of you are aware of the medical conditions/issues that Lea is dealing with; for others, this is the purpose of our message to you.
After many years of surgeries, hospitalizations, emergency rooms, we now at least have a diagnosis, Ehlers Danlos Syndrome (EDS), along with Mast Cell Activation Syndrome (MCAS), Chiari Malformation and Postural Orthostatic Tachycardia Syndrome (POTS).
Ehlers Danlos Syndrome (EDS) is a rare, uncurable, connective tissue disorder. For most people, connective tissue is the glue that holds everything together. Connective tissue can be found almost anywhere, in skin, muscles and ligaments, blood vessels, organs, gums, eyes, and etc. For people with EDS, this results in:
frequent dislocations and/or subluxations
dysfunction of the autonomic nervous system
chronic pain and fatigue
fragile skin, muscles, and ligaments
erratic blood pressure
and other challenges
EDS has affected all aspects of Lea's life and has made daily tasks difficult as she is consumed by chronic pain and frequent injuries.
As a licensed and Board-Certified Behavior Analyst (BCBA), Lea continues to work full-time with children dealing with a variety of mental health and behavioral disorders, including those on the autism spectrum. Lea's work brings her solace, knowing that she has a direct influence on making their lives better. (This is what we want to do for her!)
At the recommendation of Lea's doctor, she recently traveled to Maryland for an appointment with a neurosurgeon specializing in patients with complications from EDS. The doctor advised us that the ligaments keeping Lea's neck securely in place are compromised and require surgery to correct her C1-C2 instability, which includes bone and titanium fusions.
This surgery alone is a 10-day hospitalization and at least 2 weeks of recovery time before Lea can travel back home to Massachusetts where recovery will continue for around 3 months.
As you might expect, the costs for this surgery in Maryland could be an overwhelming obstacle in her journey towards a healthy future.
So, the purpose of this is to help ease the financial burden for Lea and her family. This money will go towards paying the out-of-pocket deductible, hospital fees, doctor fees, and other fees related to Lea's upcoming surgery.
Thank you for reading this, message and your generosity.
- Tom & Sheila Bishop
- Ginny Toland
- Bruce & Linda Lee
- Ed and Bev Ganem
- Derek Nickerson
- Lea Bolduc
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