Fleetwood Borough Mayor Tammy Gore proclaimed Feb. 15 as Angelman Syndrome Day in Fleetwood and encouraged Fleetwood residents to wear blue that day.
“Angelman Syndrome is a genetic disorder first described by an English pediatrician, Dr. Harry Angelman, in 1965; and is now believed thousands of Angelman Syndrome cases have gone undiagnosed or misdiagnosed as cerebral palsy, autism, or other childhood disorders,” according to the Mayor’s Proclamation presented during the Feb. 12 Borough Council Meeting.
The proclamation recognizes International Angelman Syndrome Day which is held annually on Feb. 15.
“Angelman syndrome is being researched by numerous professionals in order to more accurately describe its origin, physical signs, and symptoms, and behavioral characteristics,” according to the proclamation. “Early diagnosis and intervention are beneficial when Angelman Syndrome is suspected and diagnosis can now be accomplished within the first year of life.”
As part of the Mayor’s proclamation, residents were encouraged to wear blue on that day.
“We wish to bring awareness to what (Angelman Syndrome) is and to the children and families who feel its effects,” said Gore.
The Borough of Fleetwood recognized International Angelman Syndrome Day in honor of Maverick Mark. Gore said Maverick and his family are very involved in the Fleetwood School District community and the borough wanted to help bring attention to the need for a cure for this genetic disorder that affects more than 5,000 children.
“Maverick is a very special little boy, who is fortunate to have a loving family, and a community that supports him in his journey with Angelman’s Syndrome,” said Gore. “It is our wish to bring awareness to AS and what it means to the children and families that live with this disorder, and just how important it is to find a cure.”
The Mark family, cheerleading squad and others were present for the proclamation.
The Kutztown Patriot interviewed the Mark family in 2013 when Maverick was 3.
“Angelman Syndrome is a rare neuro genetic disorder that affects 1 in 15,000 live births. It is a deletion of the UBE3A gene on the maternal 15th chromosome,” Maverick’s mother, Kim, told The Kutztown Patriot in 2013, explaining that the disorder includes severe fine and gross motor skill delays, cognitive impairment, sensory processing disorder and complex communication needs. “Angels cannot speak. Receptive language is strong, expressive (language) is not.”
There are also seizures and sleep disturbances.
“Angels, however, are very social, loving, and happy,” said Kim during the 2013 interview. “If you’re having a bad day and he gives you a hug, it’s unconditional love. He doesn’t know any different. He doesn’t know the stress in this world or the evil. He just wants to love and be loved.”
The Mark family discovered something was wrong when Maverick was about 16 months old. He was missing developmental milestones and the pediatrician recommended tests. At first he was misdiagnosed with cerebral palsy but then was diagnosed with Angelman Syndrome.
“Unless some miracle happens, he is a child for life really. He’s not going to grow up and go to college,” said his father Dave during the 2013 interview.
But they hope for a cure.
Gore said the Mark family works tirelessly to bring awareness to CureAngelman.org to help find a cure.
Read the full 2013 Kutztown Patriot story at http://www.berksmontnews.com/article/BM/20130617/NEWS01/130619827.