Please help Emmalyn’s Journey to get Better

Hello, I'm Nicole Swanson, and I'm reaching out to share Emmalyn's story. She's a brave 14-year-old suffering from Chiari Malformation, EDS, Adhesive Arachnoiditis, Tethered Cord Syndrome, Syringomyelia, Mast Cell Activation Syndrome, CSF leaks and lives with 10/10 pain in her head and back everyday. She also walks with a cane as she can’t bare weight on her left leg without it giving out.

Emmalyn has been in North Carolina for the last 10 weeks. She was in a holistic program to help her and at about 8 weeks she developed a CSF leak at C3. She was taken into emergent surgery to repair it. 

We got bad news from Dr Grant and had a long talk with him! He said we need to discontinue the program with Dr Pascal as her tissue is too thin and fragile to handle the program. He is happy that we gave it a shot and we were all hoping for better results! Then we had the talk about the near and far future. Right now he is concerned with her back pain being increased and of her going into high pressure. We will have to see neuro ophthalmology today for pictures of the the eyes and eye exams to be checking for high pressure in the eyes. We will have stitch removal with his PA on April 23rd and the decision had been made that he wants us to stay local until May 21st for more MRI’s and to see him. He said that he knows it is a lot to ask but in the fragile and complicated state we are in he does not want us traveling back to Illinois before then. Unfortunately we have come to the realization today that Emmalyn will never be pain free and most likely will have a rocky road ahead of her and all I can do is pray that medical advances will come up with something some day to help her! Dr Grant has said that she will have to be monitored closely as we figure out how to navigate all of this. As for the program he felt horrible that we raised and spent all the money we did to come to this conclusion, but we all had big hopes that it could help. Such a tough pill to swallow as her mom but we will keep fighting and keep smiling and doing the best we can to give her a better life. If there is any way you could share this to help us raise the last $7500 we need to raise to be here for the next 5 weeks it would be so appreciated.Your contribution can make a significant difference in Emmalyn's journey towards recovery. Please consider donating and sharing to help us reach our goal. Thank you for your kindness and support.

#EmmalynsJourney