Together for Kai . Juntos por Kai
Donation protected
Victor Kaiyin Brown Coley (or as we affectionately call him “Kai”) is a lovable 6-year old boy full of life. He is the only surviving child of parents Kari Coley and Victor Brown, who had a long journey along the way to having a family.
At 18 months Kai was not yet speaking and his parents thought he may have been deaf. They began teaching him sign language and also took him to be evaluated. He was diagnosed with Pervasive Developmental Disorder (PDD), which is common among people on the Autism Spectrum. With speech and occupational therapy, by age 3, Kai was reading books on his own, putting together 50-piece puzzles, and counting to 100. Around this same time, he taught himself how to use a computer keyboard and was spelling and typing words. He is now 6 years old and has recently learned to ride a bike without training wheels, count into the millions, add double digits, (with the carry-over), and play the piano.
In November 2018, Kai was hospitalized for approximately 1 month for what was diagnosed then as a serious intestinal condition. He was transitioned to a gluten-free and dairy-free diet after a test showed signs of a possible gluten allergy. It was not known at the time that these symptoms were evidence of a much more serious condition.
In mid-April 2019, Kai was taken to the hospital complaining of neck pain. The ER doctor diagnosed him with stiff neck and recommended physical therapy. During this time, Kai also started to have what he described - with his limited communication skills due to Autism - as eye pain and watery eyes (which we now believe were headaches). He was taken to the eye doctor with no resultant diagnosis or treatment prescribed. After another 1.5 -2 weeks without much progress, and an incident of severe pain, he was rushed back to the same hospital. An MRI was ordered, and a mass was found…diagnosis: Posterior Fossa Tumor.
Kai was operated on within 2 days to install a shunt to release pressure from the brain fluid that had accumulated due to the blockage by the tumor. Two days later, he was operated on to remove the tumor itself. The biopsy confirmed the tumor to be Anaplastic Ependymoma - a malignant brain cancer.
The five-week recovery from surgery was a roller coaster ride of nightmares and miracles. Knowing that this delicate surgery in the cerebellum region of the brain might result in loss of breathing, swallowing and intellect made the slow but steady recovery of each skill feel triumphant for Kari and Vic. Still, the celebratory moments have been brief because radiation and possibly chemotherapy await Kai and his parents.
Nothing is scarier than knowing that your only child may not make it. But, the financial burdens of emergency brain surgeries followed by weeks of intensive care and months of other debilitating treatments is a close second in generating fear and anxiety. And just as the medical bills are mounting, the family will lose half its income as Kari remains home to care for her son indefinitely.
Kai is a fighter, and so are his parents. But, they can't do all the fighting alone. Let's pull together for Kai. Your donation will help the family get Kai the treatment that he needs for best chances of survival, recovery, and a fulfilling life beyond this tragedy and will help the family get the support services they need for their wellness to pull Kai through successfully.
TOGETHER FOR KAI! JUNTOS POR KAI!
At 18 months Kai was not yet speaking and his parents thought he may have been deaf. They began teaching him sign language and also took him to be evaluated. He was diagnosed with Pervasive Developmental Disorder (PDD), which is common among people on the Autism Spectrum. With speech and occupational therapy, by age 3, Kai was reading books on his own, putting together 50-piece puzzles, and counting to 100. Around this same time, he taught himself how to use a computer keyboard and was spelling and typing words. He is now 6 years old and has recently learned to ride a bike without training wheels, count into the millions, add double digits, (with the carry-over), and play the piano.
In November 2018, Kai was hospitalized for approximately 1 month for what was diagnosed then as a serious intestinal condition. He was transitioned to a gluten-free and dairy-free diet after a test showed signs of a possible gluten allergy. It was not known at the time that these symptoms were evidence of a much more serious condition.
In mid-April 2019, Kai was taken to the hospital complaining of neck pain. The ER doctor diagnosed him with stiff neck and recommended physical therapy. During this time, Kai also started to have what he described - with his limited communication skills due to Autism - as eye pain and watery eyes (which we now believe were headaches). He was taken to the eye doctor with no resultant diagnosis or treatment prescribed. After another 1.5 -2 weeks without much progress, and an incident of severe pain, he was rushed back to the same hospital. An MRI was ordered, and a mass was found…diagnosis: Posterior Fossa Tumor.
Kai was operated on within 2 days to install a shunt to release pressure from the brain fluid that had accumulated due to the blockage by the tumor. Two days later, he was operated on to remove the tumor itself. The biopsy confirmed the tumor to be Anaplastic Ependymoma - a malignant brain cancer.
The five-week recovery from surgery was a roller coaster ride of nightmares and miracles. Knowing that this delicate surgery in the cerebellum region of the brain might result in loss of breathing, swallowing and intellect made the slow but steady recovery of each skill feel triumphant for Kari and Vic. Still, the celebratory moments have been brief because radiation and possibly chemotherapy await Kai and his parents.
Nothing is scarier than knowing that your only child may not make it. But, the financial burdens of emergency brain surgeries followed by weeks of intensive care and months of other debilitating treatments is a close second in generating fear and anxiety. And just as the medical bills are mounting, the family will lose half its income as Kari remains home to care for her son indefinitely.
Kai is a fighter, and so are his parents. But, they can't do all the fighting alone. Let's pull together for Kai. Your donation will help the family get Kai the treatment that he needs for best chances of survival, recovery, and a fulfilling life beyond this tragedy and will help the family get the support services they need for their wellness to pull Kai through successfully.
TOGETHER FOR KAI! JUNTOS POR KAI!
Co-organizers (7)
Karen Gaylord
Organizer
Springfield, NJ
Kari Coley
Co-organizer
Aaryn Coley-Gooden
Co-organizer
Alana Dudley
Co-organizer
Milton Gaylord
Co-organizer