My name is Phillip Okapa, I live in Staten Island, and I am five years old. I love school. My most favorite things to do are running around the school yard with my friends, going to the park, and having play dates with friends. Two things that I can’t live without are my Lego’s and my brother, Kacper. He is eight years old and we do everything together. I turned five in June and started the most exciting year of Kindergarten. I have beautiful long blond hair (that I refused to let mommy cut) and big blue eyes.
In October my mom and dad noticed that my right eye started to cross. They brought me to the eye doctor who told mommy that my long hair was blocking my eye sight causing my eye to cross. My hair needed to be cut and I had to wear glasses that would help fix my eye. I was really upset about cutting my hair but mommy said I had to. The glasses I picked out made me look so handsome, though. But, after wearing them for a few days, something wasn’t right…
I got really sad and would cry every morning as we walked to school. Mommy kept asking me what was wrong but I just didn’t know. My legs just didn’t go where I wanted them to. Halloween came along and I got to be “Indiana Jones”. That was great! But, Trick or Treating became difficult after a while. Speaking, eating and swallowing was quickly becoming a problem too. I was falling a lot.
Mommy thought there was something wrong with my glasses and called the eye doctor for another visit.I went to school that day and had trouble completing my normal tasks. Mommy called my doctor and she said to take me straight to the Emergency Room. It was there that my mommy and daddy got the worst news possible, "...there was something large on my brain stem”. (The stem controls most of the body’s functions such as walking, chewing, swallowing, and seeing).
The hospital quickly moved me to the “Steven & Alexandra Cohen Children’s Hospital” in Long Island for more tests. My grandparents came from Chicago to the hospital to help mommy, daddy, Kacper and me. On Wednesday, November 2nd, the doctors told my family that I have a rare cancerous inoperative brain stem tumor called a, “Diffuse Pontine Glioma”. The prognosis, is, as mommy and daddy keep saying, “NOT LONG ENOUGH”. I needed six weeks of Chemo and Radiation, five days a week. Mommy doesn’t drive so grandma had to move in and drive us to and from Long Island everyday. The Radiation helped shrink the tumor so some of the side effects went away for a little while. But, this type of tumor is very aggressive and it grew back quickly after Radiation/Chemo...
Recently, Phillip's parents took him to a world renowned Pediatric Neurosurgeon at New York Medical Center (NYU). Unfortunately, he told them that he would not take the risk on Phillip. He said that unless he could remove 90% of the tumor he wouldn’t be willing to operate. Due to the tumors location, it would be impossible to remove enough of it to stop or drastically slow down the aggressive tumors growth. He advised them to begin another round of Chemo and search for more clinical trials. However, Chemo and Radiation are only expected to give a child a 6% chance to survive after 5 years.
Unsatisfied with the surgeon’s response, Phillip’s parent’s, intensified the search for answers and happened upon the “Burzynski Clinic” in Texas. Dr. Stanislaw Burzynski has pioneered an innovative and cutting edge “Personalized Gene Targeted Cancer Therapy”. However, it costs $30,000 to enter and $7,600 per month just for the medication (This does not include all other expenses such as, food, lodging, transportation, etc.) The average patient could expect to be there for 3 weeks but the medication can be administered for 6-12 months.
**Fortunately, with the help of family and friends, Phillip's parents have been able to raise the $30,000 entry fee and the first month of medication so far!!
**That being said, the money we're trying to raise now is for additional medication expenses after the first month AND the expenses incurred on the way to the clinc in Houston, Texas, the expenses while in Texas, and then back home. The Okapa's must live and pay rent/lodging there for three weeks. They will also need help with the mortgage payment for their home in Staten Island for the month they will be gone.**
ANY CONTRIBUTION WILL BE MUCH APPRECIATED! EVERY DOLLAR COUNTS!
It would also mean just as much if you could please pass this along to your family and friends. The more people we can spread the word to, the closer we get to helping Phillip.
PLEASE, PLEASE, help give young Phillip a fighting chance!
Thank you and God Bless!