$690 of $10,000
14 donations

This fundraiser ended on 08/31/13

Create a fundraiser like this

My sister is 1 of 6 cases in the United States with Subependymoma W.H.O. Grade 1 Low Grade Glial Neoplasm. Please show her your support!

My sister, Heather, is 19 and like most kids grew up just as happy and healthy as the next. She was never sick with anything more than the common cold and never did we think that she would be a statistic such as 1 of 6 in the U.S. to have a brain tumor such as Subependymoma W.H.O. Grade 1 Low Grade Glial Neoplasm. Subependymoma W.H.O. Grade 1 Low Grade Glial Neoplasm most commonly form in the fourth ventricle followed by the lateral ventricles. The findings are usually incidental. In Heather's case it was found after she collapsed one day at home very unexpectedly. Heather has been experiencing drastic weight loss over the past two years and it was all so strange to us. She always carried her size 3 body perfectly and out of nowhere we began to notice changes. She began seeing doctors and specialists one after another but no one was giving her any answers. Her primary doctor was treating her as though it was depression and stress. (As many of us know, stress usually packs on the weight.) We became very concerned for her and she became highly embarrassed of her body. Heather wasn't confident wearing a bathing suit because you could count her ribs and her hips would stay so sore. She went through so many blood tests and scans, only to have no answers. Two years later here we are, finding the answers we have been looking for. Heather has common head aches but she never complained of them being TOO severe. On April 17, 2013 she was at home with our Mom. She stood up to walk across the room and Mom noticed her legs turning to jello as she grabbed for the door frame as she was falling. Luckily Mom was able to catch her before she hurt herself on the floor but Mom said we need answers and we need them now! Heather was put into the vehicle and drove to the emergency room. Once she arrived they checked her vitals and heart and everything that is standard. The doctor asked if she had any symptoms that day and she mentioned her headache. Right away she was sent for a CT Scan which showed an abnormality on her brain. An MRI was ordered the same day and by 10:30 p.m. we knew she had 5 tumors on her brain, with the largest (4cm) being on her pituitary gland and 2 tumors on the base of her spine. This was the reason for her weight loss, dry hair that was beginning to fall out in clumps, and her headaches. She held her composure as the doctor gave her the possibilities of it being cancer, while the rest of us were a mess of tears and stress. Since the MRI results, Heather has been through brain surgery to have the larger part of the tumor removed from her pituitary gland for biopsy and further testing. The surgery was held on April 30, 2013 and it was successful. The hospital got their results back within 2 days and that is when we found out she had Subependymoma W.H.O. Grade 1 Low Grade Glial Neoplasm. This is malignant but it is slow growing and non-invasive. The doctors said Heather has probably had the tumors since birth but they grow as such a slow rate it has taken this long to show any symptoms. Heather is progressing very well since surgery but she is still very weak. She has been taken out of ICU this week but we have learned that she will have to go out of town for 4-6 weeks for Proton Treatment, which is radiation that gets targeted directly to the tumor which leaves little to no damage to the surrounding tissues. This treatment is the best option in order to treating her without damaging her esophagus, stomach, bladder and her reproductive organs. Heather may also have to have surgery to remove the tumors from her spine. We are asking, as a family, for your generosity and support to help Heather afford her medical bills as well as her travel expenses and further treatment for the Proton Therapy. She and my Mom will have to stay in either a hotel or apartment during this 4-6 weeks because she cannot leave the area of the hospital but within just a few miles since treatment will be 5 days a week. This trip will not be cheap and with my parents taking time from work they would appreciate any help. Thank you for reading Heather's story and thank you for your generosity and blessings.
View more


Supporter activity

Login to post a comment
or Login