
Help XI overcome Anaplastic Ependymoma!
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Give Xi a Fighting Chance!
At birth, Xi was the personification of perfect health. He was born full-term, without complications, and met all of his milestones. Until now, with most of his life being spent in a pandemic, amazingly Xi had only one cold with one sick visit to the doctor in his 28 months of life. That all came to a humbling halt this summer as his parents Michael and Kris would realize their worst nightmare. In June, Xi started experiencing projectile vomiting and nausea that would not go away. This affected Xi's otherwise cheerful spirit, infectious laugh and his day to day energetic activity. At the time, Kris was 30 weeks pregnant and the fear of what might be affecting Xi took a toll. Her and Mike grew increasingly concerned after countless doctor visits, sometimes multiple times per week that rendered no solid solution. After weeks of uncertainty, X Rays, CT scans, blood samples, anesthesia, different medical opinions and lots of worry, Xi was found to have a rare brain tumor in early July. Removal had to be done immediately and he underwent major brain surgery a short time later. His 5-hour procedure resulted in a successful GTR (Gross Total Resection); the miracle the family had prayed for. Although this was just the beginning of a long journey ahead, there was a sense of relief that Xi IS on his way to a fruitful recovery.
The recovery process was slow and not what was expected. The family was left to wait a grueling 2 weeks to receive the report from the extraction. Some days were really good and others were really bad, but nothing could compare to the diagnosis that followed. Xi was diagnosed with a Grade 3 Anaplastic Ependymoma; a fast-growing rare cancer tumor in the base of the brain. Since his initial tumor resection, Xi has undergone four invasive and aggressive procedures. The doctors and specialists told his parents that in order to ensure a full recovery, Xi would need 6 months of treatment and around-the-clock care. The treatment plan had to be mapped out with urgency!
Out of 330 million people in the US population, there are only about 180 diagnoses of this disease per year. Xi is now in that number and we are actively working with his medical team to give him the long, healthy and happy life that he deserves. Mike and Kris are filled with hope and are holding on to their strong faith that Xi will and does have complete healing as his outcome. The prognosis is promising but they are not out of the woods yet. For now, his family and medical team are doing everything they know how so that this chapter in his life can come to a close. His treatments are a precautionary measure so that the tumor does not recur and Xi can lead a full quality life.
The journey ahead is long. Both parents have since stopped working to care for Xi full time. Xi is blessed to be able to receive such incredible care but with the extremely intricate surgery and treatment comes a large financial burden. For the next six weeks, he will undergo preventive and rehabilitative treatment that the doctors are insisting will render positive results. Xi has had a tumultuous journey thus far for a 2 year old and has maintained a positive attitude throughout. We are asking for your assistance to help this beautiful family through this. Xi is an inquisitive, energetic and happy child who will greatly benefit from your donation which will go toward medical bills, caretaking and treatment. Our hope is that Xi's light will continue to burn bright for many years to come, but we need your help! If you can find it in your heart to give Xi a fighting chance, we want to say THANK YOU from the bottom of our hearts. God bless you and your family.
Please contribute generously, and share this link with your family and friends. No amount or gesture is too small.
Organizer and beneficiary
Juliet Johnson
Organizer
Fort Lauderdale, FL
Xi Nagessar
Beneficiary