A family friend of our own Sam Tarasenko is in need. In Sam’s own words, “I have begun running a campaign for a friend of our family who came from Ukraine in search of treatment for her son Matthew, who has Crigler-Najjer syndrome. He is only twelve years old. I'm including the link to the GoFundMe that his mother Nina and I put together. In the coming months, I plan to do benefit events for this cause. Please spread the word. Any donations would be greatly appreciated.” You can learn more about Matthew’s story and needs below and you can reach the GoFundMe link RIGHT HERE.
HELP MATTHEW ON GOFUNDME
I am a mother of one wonderful and truly special boy. This year, my son turned 12 years old. By this age, Matthew already been through so many difficulties that others do not even begin to encounter during their entire life span. When Matthew was only three months old, he was diagnosed with a genetic disorder named Crigler-Najjar Syndrome, which is a rare inherited disorder affecting the metabolism of bilirubin (a chemical formed from a breakdown of the heme in red blood cells). This is an extremely rare disease estimated 0.6-1.0 per million life births. Therefore, throughout his life, the child has been living on life-essential therapy, sleeping under special lights that help to manage the metabolism of bilirubin and keep the levels of the toxic substance down.
Aside from the obvious life-threatening conditions, Matthew has been through a lot of emotional turmoil because of his unusually yellow skin color, which is one of the symptoms of the disease. His yellow skin color has often attracted negative comments and bullying, even when he was a toddler and a very young boy. In spite of all the negativity of the world going his way, he has been growing up as a very social, joyful, kind, caring, and life loving child.
One night, when Matthew was 7 years old, he was sitting on a floor playing with his favorite Lego puzzles. He just got over a very short cold. He tried to get up. He couldn’t. Next morning he stopped moving and talking completely. At the moment we were still in Ukraine. The doctors couldn’t help us and couldn’t explain his sudden loss of movement and speech. In about 2-3 months his health rapidly deteriorated. This time, after hemosorption (a special blood cleansing process) that was conducted in a hospital, his condition took a turn for the worse. To put it simply, he was dying in front of our eyes.
That’s when one of my close friends found a unique clinic in Strasbourg, Pennsylvania, USA, where they treated children with various genetic disorders. With financial help and invitation from the church in Lancaster, PA, we were able to become patients at “Clinic for Special Children”. I will always be grateful for this unique opportunity.
Now, it’s been four years, and because of variety of reasons as well as some unforeseen complications of the genetic research itself, Matthew's genetic treatment has been postponed. It seems that the most vital goal for the time being, is the rehabilitation of some basic neurological functions.
Fortunately, we found a place - Hope Brain & Body Recovery Center that is willing to work with us. We are asking for funding to take an advantage of their complex program. (The center is private and is not covered by our insurance or Medicaid. However, it is one of the few centers that has the constituents of the therapy that Matthew needs)
We are going to need to attend this center for 6 month if this therapy works for him. The estimate for a month of treatment is about $3520, plus initial analysis and tests are approximately $1500.
I am asking for the funds for 6 months of treatment, which is $22,620 total.
We would be extremely grateful for any contributions that you may be able to provide us with.
I am sure that with your help we can finally see the results, and, hopefully, change one child’s future. Matthew deserves to have a chance and deserves to have a better life.
Thank you for your attention,
Sincerely,
Nina
