HELP ME HELP MY DAUGHTER
My daughter, Sydney, has a rare connective tissue disorder known as Ehlers-Danlos syndrome (EDS)https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome . A person with EDS has faulty collagen (the glue that holds our bodies together). The symptoms of the disease are chronic pain and a number of other debilitating ailments. The condition is so rare that fewer than 200,000 cases are diagnosed in the United States each year.
Imagine constantly living with chronic pain.
Yet, Sydney—who is 16 years old—has lived with constant chronic pain all her life. For my daughter, life involves:
· Frequent migraines.
· Locking joints that impede her ability to walk or even move on her own.
· Countless trips to doctors or emergency rooms.
· Loss of relationships, due to her diminished capabilities.
· And not least of all, the depression that results from all of this.
Unfortunately, the doctors misdiagnosed EDS as growing pains when Sydney was in elementary school. The defining moment came at age nine, when Sydney’s first migraine threw her into an uncontrollable screaming fit. That migraine was followed by many more migraines and much more.
At times, Sydney cannot move and must be carried from one place to another and fed. At other times, she can function, in spite of the pain. At age 16, Sydney has spent more time at medical facilities or at home than at school.
My daughter is very bright. She has an IQ of 135 and always easily has been at the head of her class. Until this illness interfered with her school attendance, she had always done well in school and had planned to be a Harvard-trained attorney since the age of 6. But instead of anticipating her future, she ponders its uncertainty and drifts into depression. My daughter asked me recently, “If you knew that I would have so many challenges, would you have had me?” At another time, she stated, “If you could have chosen, you would not have chosen me as your child,” and most recently she declared, “I have nothing to be proud of.” I reassure her that my love is not based on what she can or cannot do. I admire her, and with the advancement of medical science, technology, and God’s power, I believe that she has a great future.
My daughter is the greatest joy in my life. My faith has allowed me to comfort her in her suffering and witness her strength as life deals her unimaginable challenges. I am willing to make any sacrifice necessary to help her live her best life.
Unfortunately, as a single mother, caring for her also has made it very difficult for me to maintain employment. Although I have more than 20 years of experience as a senior-level marketing and business analyst, both professionally and in a teaching capacity, the unpredictable nature of Sydney’s condition creates complications that most businesses often want to avoid.
It grieves me to ask for help, but I realize that my pride can be detrimental to my daughter’s well-being. Yes, we need financial resources—she needs to see doctors who are out of state and even out of the country—but we also need prayer, connections, and emotional support.
Recently, stem cell research has been shown promise, but at an estimated $100,000, there is no way we can afford that treatment. The country that knows the most about Elders-Danlos is the United Kingdom. There is also a promising study being performed in Paris. In addition, non-traditional medicine may be useful, but insurance does not cover those services.
So I am reaching out through this site for your assistance. If you can offer anything—from funds to prayers, to job connections, to experts who may be willing to assist my daughter—they all will be gratefully and humbly received. All I want is to be able to support my daughter and give her the life that she deserves.
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