My niece Riley Noreen was diagnosed with Neurofibromatosis type 1 in November 2018 at 3 years old, she was hospitalized for sometime due to having an almost fatal blood pressure caused by her right kidney’s artery being restricted and trying to find the right medicine. She was released when they thought she had the right medication but Sadly the medicine they tried to use at first didn't work and she ended up with a serve allergic reaction. They were once again admitted into the Phoenix Children's Hospital. Finally they had found the right medicines to work with her body in the beginning of 2019 and was placed on three different medications having to take 4 times a day to keep her blood pressure in the correct range. Time went on and she was monitored closely by the doctors at the children's hospital with check ups and by her mother and father at home. Through out these check ups Rachel her mother kept insisting that they preform a surgery where they put a stint in, to open the right kidney's artery and that way Riley would potentially not have to be on so much medication. The Doctor did not want to go through with that procedure and instead kept Riley on the medications and continued with the follow ups at Phoenix Children’s Hospital. The Noreen family lives 3 and a half hours away from said hospital and has had to pay for gas, food, and hotels when going to these check ups and driving right back up wasn’t seen as an option due to not wanting to stress or fatigue Riley’s body. We thought things were going good and we made it to 2020 with little miss Riley having no problems that we could see but on March 3rd everything got turned upside down. We had taken Riley and her Cousin to Mcdonalds to eat and play, Rachel and Scott went to order food while her uncle Colten and I watched the girls in the play area when suddenly Riley fell inside the play place and hit her head she started to cry and looked off balanced I told her to try and make her way down to me and I would try to climb up and meet her half way. When I got to her something was terribly off she was slurring badly and the right side of her face was having difficultly moving when she talked. I quickly brought Riley to the table and sat her down, that’s when Rachel (mom) and Scott (dad) had returned. Rachel asked what had happen and we both stood there examining her asking her questions about why she couldn’t move the right side of her face, Riley said she didn’t know why and that it just felt funny. Rachel, Scott, Colten, and I decided it was best she go to the ER right away because of past experience with her Uncle Colten having a stroke. Rachel and Scott got Riley to Show Low Summit Hospital and there they decided to life flight Riley to Phoenix Children’s Hospital because they believed she had a stroke and there was an underlying issue and due to Show Low being a small town we don’t have the specialist here needed for Riley’s conditions. They Arrived at Phoenix Children’s Hospital and they started test right away and on March 5th test showed Riley had Moyamoya diseased. Moyamoya is a rare genetic diseased that affects 0.086 in 100,000 Americans and is even more rare with people who have NF1. Moyamoya can be fatal if not caught in time. Due to Riley being Diagnosed with Moyamoya she is now going to have to have brain surgery within the upcoming week, they will now have to go into her brain and reroute her arteries. They also believe that Riley’s right kidney might have possibly died off during this time and today she will be undergoing more scans and is also looking at having surgery to remove the right kidney. Rachel and Scott are staying at Phoenix Children’s Hospital with Riley but are looking at added expenses now. Rachel and Scott have to pay out of pocket for their food, drinks, laundry cleaning, hygienic supplies, and whatever else is needed during their stay. They were unable to pack much due to being life-flighted down there.




In the mist of all this going on Rachel and Scott have been going through a rough couple years aside from Riley’s medical conditions, They have been going through a lawsuit with the builders of their house fighting for justice, dealing with walk throughs and visits from the R.O.C and recently this year Rachel had her V.A benefits fraudulently taken from her and she has had to go with out her V.A check already putting them behind on her normal bills. Their hoping the V.A and the Police can figure out who frauded her account soon so they can get back on track in the near future. I’m starting this go fund me in hopes to help alleviate some of their stress in their trying times. Please any little bit that can be donated will be greatly appreciated.