Dizziness, nausea, lightheadedness leading to frequent fainting, rapid heartbeat and palpitations, shortness of breath, chest pains, throbbing headaches, muscle weakness, muscle and joint pain, fatigue, poor concentration and brain fog, inconstant vision, sleep disorders, body chills, noise and light sensitivity, loss of appetite, the inability to exercise, and loss of sensations concerning bowel movement.
Maya experiences these ALL of these unpredictable symptoms daily, and more.
In these 4 years, Maya has experienced:
- Trial-and-error medications
- Up to 20 pills a day
- Multiple infusions
- Countless hospital stays
- Countless MRIs and tests
- Educational boundaries
- Homebound schooling
- Mistreatment from educators and peers
- Loss of socialization
- Adjustment to a sedentary lifestyle
- Developed EDS
- Developed ADHD
- Developed Depression
- Developed Anxiety
- Developed Asthma
- Developed a Syrinx of the Spinal Cord
- Chronic pain & fatigue
- Unpredictable fainting
- Inconstant vision/blackouts
Maya's EDS this year has developed quickly. EDS, Ehlers-Danlos Syndrome , is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body. Maya frequently uses either a wheelchair or walker to help her move around.
Due to EDS, Maya has recently undergone a Tethered Spinal Cord Release surgery. A neurosurgeon released the source of a patient’s tethering by opening the back and the spinal column to gently cut away the spinal cord from the scarred attachments. The procedure releases the spinal cord so it can move freely within the spinal column. Maya is currently in recovery, able to start Physical Therapy in about 2-3 months. For the moment, Maya has a very limited range of motion, avoiding twisting, bending, and sitting/standing for long periods of time.
After years of complicated problems with her schools and education, we have decided to pull Maya out of high school. Maya is motivated to achieve the GED on her own time, and at her own speed following her recovery.
POTS is considered an invisible illness, as it is a chronic illness that significantly impairs normal daily activities while showing no outward signs of illness. Due to this, Maya recieves constant misjudgement, misdiagnoses, and rude treatment by her peers, educators, and spectators.
Donations would go towards her treatments and surgeries at Georgetown Children's Hospital in DC, the Mayo Clinic in Boston, housing in the Ronald McDonald House, and all related medical expenses.
Our family asks for your financial assistance. With one parent constantly missing work to care for Maya, and a daughter attending the University of Mary Washington, finances are tight. Please find some goodness in your heart to help us care for Maya's health and future.
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