As parents most of us pray every day that our children will remain healthy and thrive. But for some children that's a tough order to fill, especially when they are born with a disorder for which there is no cure.
You may have never heard of Angelman Syndrome because it affects just one in 15,000 births. But you'll be hearing more because a well known actor is now bringing awareness to the syndrome.
As is a local doctor who deals with babies fighting for their lives in every day recently found out his own baby suffers from this same genetic disorder.
Colin Farrell, famous actor, explains how is son has a fairly unknown syndrome, “My boy James was diagnosed with Angelman's Syndrome, very happy child.”
Colin Farrell is known for his acting, but most recently he's been speaking out on real life issues, like the incurable disorder which his eight year old son James suffers from, Angelman Syndrome.
Not quite as well known, but certainly a well known neonatologist in our area, Dr. Vitaliy Solveychick found out ten months ago that his happy go lucky son, now 20 months old, suffers from the same neurological disorder.
Many Angelman children, who are always happy, are often misdiagnosed with Autism or Cerebral Palsy and never speak or walk, so this doctor and his wife Anna knew what they were facing.
Vitaliy Solvevchick, explains his thoughts when his son was first diagnosed, “It was a big shock for us. Of course with my job I console people often but now I really feel their emotion.”
Anna says she suspected something from the start. Aaron wouldn't nurse or sleep but started missing milestones, so a geneticist ordered chromosomal blood tests. And the lives of this family of six forever changed.
Anna Solveychick, explains her thoughts after her son was diagnosed, “It was unbelievably sad but then little by little we came around and started seeing positives in Aaron, but he's happy and he's a delight. He shows so much love to everybody he see's so I think it's a blessing.”
A blessing, but the Solveychick want a cure so their fourth child can learn to walk and talk.
And last week that took them to a Chicago gala, where Colin Farrell was not walking the red carpet but speaking on behalf of the Foundation for Angelman Symptom Therapeutics, or FAST, which raises money and awareness for research for this little known disease.
FAST is funding a Florida doctor’s research which has cured mice, now treatment will be started soon on kids 4 to 12 years old.
Vitaliy Solveychick, explains when the testing will begin, “It's going to start in January and hopefully we will have some preliminary results before summer starts.”
Sadly, Aaron cannot be part of that study, but the Solveychick's pray that one day that research will help their son.
Vitaliy Solveychick, describes his dreams for his son, “My hope is that hopefully we will find a cure and he will be able to walk and talk.”
Anna Solveychick, describes her hopes for her son, “We really hope that one day he can say mama and daddy, just communicate with us.”
In the meantime, the family will enjoy this happy little boy whose joyful face tells nothing of the battle he is facing.
This Saturday Bob Costas will host the first ever American Giving Awards on NBC.
It will be a star-studded lineup of musical guests and Colin Farrell will be honored for his work for Angelman syndrome.
You'll learn a lot more about this disease and find out how you can help find a cure for kids like Aaron and James.
For more information on Foundation for Angelman Syndrome Therapeutics: http://www.cureangelman.org/