Hello, I am Jim, the grandfather of Niko and we are raising funds for his complex medical needs. Because of the complexities Niko and his family (of four) must travel out of state for most of his major medical care, incurring travel, hotel and other living expenses. Blessings, ❤️Jim (Facebook hash tags #) #TeamNiko #NikosMedicalJourney Their Story: Niko is a very sweet six year(now 7) old boy who has been going through a lot of medical challenges in his short life. In fact, he has had to battle more medical conditions than most adults will ever see in their lifetime. With all that he endures each day including many, many doctor visits, hospital visits, testing, rehab and therapy he amazingly still tries to find moments of time to live as a boy should. His favorite things to do are play with his sister, create paper airplanes, and building legos. Even with those simple playing activities, his need to to rest and recover after playing is great because of his bodies chronic pain. Through the past 6 years (now 7 years) he has gained many medical diagnoses. He has a connective tissue disorder, tethered spinal cord disease, cervical laxity (retroflexed dens), urological conditions from the nerves in Niko’s spinal cord being stretch and having tethered cord, kidney reflux VUR, congenital complex polydactyly and syndactyly of the hands/feet, intermittent high intracranial pressure, and has duplications and deletions of his chromosomes just to name a few. He has been through 8 reconstructive hand and feet surgeries, 1 spinal surgery for tethered cord, ICP monitoring, complications of pseudomeningocele (a spinal fluid leak) urological and kidney complications and emergencies. These conditions vary in severity in each person. Niko unfortunately has more severe symptoms, and needs from his medical conditions. He has been dealing with chronic pain his whole life and they have been on a journey to help him in any ways they can medically. We also seek to help him emotionally thrive with so much continuing medical trauma. With these medical diagnoses comes numerous MRI’s, painful procedures, more possible surgeries, lumbar punctures along with other testing, brain mapping, palliative care, out of network specialist, various scans and a lot of rehabilitation therapy. He is in the care of 9 doctors/specialists at 2 of the best hospitals in the country. This long enduring journey to help Niko heal his chronic pain and care for his many medical conditions has put a financial and emotional strain on this family in ways that they had never imagined. There is past and current medical debt, as well as future medical expenses. Niko’s Mom has been and still is first and foremost mom, but also 100% caregiver as well. She has been unable to work simply because caring for a medically fragile child is more than a full time job. Niko’s Dad is the sole income provider. He works incredibly hard in his job, but also plays in important role emotionally, spiritually, and physically supporting his wife and kids as they navigate this medical journey. This includes using every sick day, vacation days and plus more days off to care for his family. Please keep Niko and the family in your prayers as they travel out of state for more important testing and procedures related to his diagnosis’. They will be on the road and out of state for some time for Niko’s medical care with a special team of drs who will follow up help care for Niko. “ . As you can see, the burden they carry is heavy, which is why this “Go Fund Me” was created. Please prayerfully consider helping in one of these two way: Emotionally, we can come alongside this family with love, prayer and compassion. Financially, we can come alongside this family to enable them not to be drowned in medical debt and also enable them to seek future treatment that has the potential to be life changing for Niko's quality of life and a future. Educational links: Complex Syndactyly And Complex Polydactyly: https://www.childrenshospital.org/conditions/syndactyly Polydactyly: Overview, Surgical Treatment and Care at Home Connective tissue disorders: https://www.healthline.com/health/connective-tissue-disease Urological conditions: https://allianceurology.com/service/neurogenic-bladder-spinal-cord-injury-2/#:~:text=The%20result%20may%20be%20overactive,urinate%20more%20often%20than%20normal. https://www.mayoclinic.org/diseases-conditions/vesicoureteral-reflux/symptoms-causes/syc-20378819 Chronic pain and other: https://my.clevelandclinic.org/health/diseases/15833-neuropathic-pain Odontoid Retroflexion | Institut Chiari & Syringomyelia & Scoliosis Barcelona https://medcraveonline.com/MOJS/pseudomeningocele-after-spine-surgery-an-important-cause-for-failed-back-syndrome-and-its-managementndasha-mini-review.html Tethered Cord Syndrome Weill Cornell Brain and Spine - Tethered Cord Surgery https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/encephalitis/diagnosis/intracrainial-pressure-monitoring.html
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