Mia's Road Back to Health
Donation protected
Dearest friends and family,
I never thought I would use gofund me again except to make donations to others in need. While we have some really positive news going on with other members of the Frey family, Sarah, who is just 21, is struggling everyday just to lift her head. 4 years ago Sarah was diagnosed with PTC also known as IIH. This is a disease primarly in young women, and in Sarahs case was brought on by a medication misused for migraines. What this means in terms of those affected by the disease is that her body makes too much spinal fluid that accumulates in her head. It is a form of hydrocephalus, but so much more.It affects her vision, neck and back pain and a host of other problems. Over these 4 years we have been to numerous doctors in several countries, who simply wanted her to take medication to lower the amount of spinal fluid produced. She has been hospitalized more times than I can count, each time needing a spinal tap, and days of intense therapy to allow her to function again. Had this condition been dealt with properly early on, we would not be in the situation we are in now. She has lost more than 80 percent of her vision, which is unlikely to return, has had one neuro surgery to place a shunt in her brain and is facing a second surgery in the upcoming days. Thank GD we have found a team of Dr's in Belgium who are world leaders in treating this rare disease. Finding the amount of "pressure" that she can handle is difficult to say the least. Out of 10 patients that may present with this disease, usually only 1 or 2 have the complications that Sarah is facing. She is also facing many of these difficulties due to mistreatment for such a long time. Since her "shunt" or brain drain as we like to call it, she has suffered 3 strokes, each of which have left her increasingly unable to care for herself. She is unable to be left alone, many times she suffers from extreme confusion to the point that she does not know what day it is, or even family members. These strokes were not the fault of the doctors, but because she suffers from such fragility in the disease, the amount of the drain has to be regulated to within centimeters. We not only hope but pray that this next surgery will provide the correct amount of pressure so she is able to begin functioning at any level. We know the last year and a half has been a true disaster for everyone, with Covid and loss of jobs, and families in crisis. I hope you can find it in your heart to once again help us, as we were just getting back on the road to recovery, but have been knocked back down again. We have faith that through prayers, shares, positive thoughts and donations, we will make it through this. Any donation is unbelievably appreciated as well if you are able to share this on your facebook page, that would be a blessing as well. We will be back with frequent updates and we are sending our love and appreciation to each of you for just taking the time to read this.
I never thought I would use gofund me again except to make donations to others in need. While we have some really positive news going on with other members of the Frey family, Sarah, who is just 21, is struggling everyday just to lift her head. 4 years ago Sarah was diagnosed with PTC also known as IIH. This is a disease primarly in young women, and in Sarahs case was brought on by a medication misused for migraines. What this means in terms of those affected by the disease is that her body makes too much spinal fluid that accumulates in her head. It is a form of hydrocephalus, but so much more.It affects her vision, neck and back pain and a host of other problems. Over these 4 years we have been to numerous doctors in several countries, who simply wanted her to take medication to lower the amount of spinal fluid produced. She has been hospitalized more times than I can count, each time needing a spinal tap, and days of intense therapy to allow her to function again. Had this condition been dealt with properly early on, we would not be in the situation we are in now. She has lost more than 80 percent of her vision, which is unlikely to return, has had one neuro surgery to place a shunt in her brain and is facing a second surgery in the upcoming days. Thank GD we have found a team of Dr's in Belgium who are world leaders in treating this rare disease. Finding the amount of "pressure" that she can handle is difficult to say the least. Out of 10 patients that may present with this disease, usually only 1 or 2 have the complications that Sarah is facing. She is also facing many of these difficulties due to mistreatment for such a long time. Since her "shunt" or brain drain as we like to call it, she has suffered 3 strokes, each of which have left her increasingly unable to care for herself. She is unable to be left alone, many times she suffers from extreme confusion to the point that she does not know what day it is, or even family members. These strokes were not the fault of the doctors, but because she suffers from such fragility in the disease, the amount of the drain has to be regulated to within centimeters. We not only hope but pray that this next surgery will provide the correct amount of pressure so she is able to begin functioning at any level. We know the last year and a half has been a true disaster for everyone, with Covid and loss of jobs, and families in crisis. I hope you can find it in your heart to once again help us, as we were just getting back on the road to recovery, but have been knocked back down again. We have faith that through prayers, shares, positive thoughts and donations, we will make it through this. Any donation is unbelievably appreciated as well if you are able to share this on your facebook page, that would be a blessing as well. We will be back with frequent updates and we are sending our love and appreciation to each of you for just taking the time to read this.
Organizer
Lisa Frey
Organizer
Atlanta, GA
