Help Sophia get medical care to live and thrive

Hi friends. My name is Kathy Belanger. My daughter has suffered from chronic illness since birth, but still lived a somewhat normal life, dancing and doing gymnastics every day! Then, at the age of 15, she began passing out.  The doctors could not figure out the cause but suspected it was her heart. Since then she has undergone multiple heart procedures to correct defects, and that is how the diagnosis of Ehlers Danlos was discovered. As a young child, she was also been diagnosed with growth hormone deficiency, and had to take daily synthetic growth hormone injections so she would grow to a normal height. Then more recently came the Elhers-Danlos syndrome diagnosis, Scoliosis, Postural Orthostatic Tacycardia syndrome, dysautonomia, Mast Cell Activation Syndrome, and we are still uncovering more medical conditions. Due to her illnesses, she has become wheelchair bound, and cannot walk longer than 10 feet without passing out. The blood pools in her hands and feet when she stands and they then turn black because her body does not know how to regulate itself. This takes away blood from much needed places like her brain and heart, causing tachycardia and fainting. She is due to get evaluated at Mayo Clinic on March 20-21, and then again in April. Unfortunately, the cost of this evaluation is not covered completely by insurance, leaving her a $13,000 copay, as noted by Mayo. We have already had to reschedule the appointment due to lack of funds. In addition, she needs a custom wheelchair for transport that costs approximately $8,000, plus the cost of travel and hotel stays near the Mayo Clinic. I have been through so much with my daughter’s health since she was born, and have dedicated my entire life to caring for her. As a single mother working full time, this has been very difficult.  The price of all of the medical bills is becoming overwhelming to us and we fear it’s either my daughter’s health or our home. Any help big or small is appreciated. Please let me know if you would like me to provide links to research these debilitating disorders. I have included one link for Elhers Danlos below. It is a debilitating disease that causes extreme pain, joint hyper-mobility, painful joint dislocations, artery dissections, aneurysms, tissue disorders, and many, many other health problems.  There are several types of Ehlers Danlos, and they are often linked to many of the other disorders my daughter has that could be life threatening. Thank you again for any support! I appreciate each and everyone of you! Please feel free to ask any questions!  Please help spread Ehlers Danlos awareness! It is a poorly misunderstood disorder, and treatment consists of trial and error with very few doctors understanding it or how to treat it.  I pray for the day that they find a significant treatment or cure for this condition for all of the patients suffering from this debilitating disorder! Zebra strong! Zebra warrior! Spread the word!

https://www.ehlers-danlos.com/what-is-eds/