Bill Text: NY K00605 | 2019-2020 | General Assembly | Introduced

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Bill Title: Memorializing Governor Andrew M. Cuomo to proclaim December 4, 2019, as Pallister-Killian Syndrome Day in the State of New York

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Passed) 2019-06-18 - adopted [K00605 Detail]

Download: New_York-2019-K00605-Introduced.html

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Assembly Resolution No. 605

BY: M. of A. Jones

        MEMORIALIZING   Governor   Andrew  M.  Cuomo    to
        proclaim  December  4,  2019,  as  Pallister-Killian
        Syndrome Day in the State of New York

  WHEREAS,  It  is  the  custom  of this Legislative Body to recognize
official days that are  set  aside  to  increase  awareness  of  serious
health-related  issues  that  affect  the  lives of citizens of New York
State; and

  WHEREAS, Attendant to such concern, and  in  full  accord  with  its
long-standing  traditions  this  Legislative  Body  is  justly  proud to
memorialize Governor Andrew M. Cuomo to proclaim December  4,  2019,  as
Pallister-Killian Syndrome Day in the State of New York; and

  WHEREAS,  Pallister-Killian  Syndrome  (PKS)  is  an  extremely rare
chromosomal disorder occurring for no apparent reason; it is  clinically
mosaic tetrasomy of 12p which means people with PKS have 4 copies of the
short  arm of chromosome 12 rather than the normal 2 in some, but not at
all, of their cells; and

  WHEREAS, Selecting December 4th as the day of recognition for PKS is
derived from chromosome 12, 4 copies of the short arm; and

  WHEREAS, Children born with this syndrome  suffer  from  low  muscle
tone, global developmental delay, seizures beginning in infancy, lack of
speech  development,  and  intellectual  disability;  they may also have
hearing and vision loss; and

  WHEREAS, There are fewer than 300  known  cases  of  PKS  worldwide;
however  medical experts believe the actual incidence is higher and that
there remain undiagnosed cases; and

  WHEREAS, Jay Wood is a student at Peru Central School who  has  been
diagnosed with PKS; Jay works extremely hard every day to complete tasks
other  children  his  age  take  for granted; he can now sit momentarily
unassisted, is learning to feed himself and greets his classmates with a
"hi"; he loves life, has a wonderful laugh, eats anything chocolate  and
is  one  of SUNY Plattsburgh's biggest hockey fans; most of all Jay is a
loving son, and brother to his sister, Emma; and

  WHEREAS, Research, education and understanding of PKS  will  aid  in
the  early  diagnosis  of  children  and  will  benefit the families and
individuals facing the many challenges affected by the disease; and

  WHEREAS, It is imperative that there be greater public awareness  of
this serious health issue, and more must be done to increase activity at
the local, State and national levels; now, therefore, be it

  RESOLVED,  That  this Legislative Body pause in its deliberations to
memorialize Governor Andrew M. Cuomo to proclaim December  4,  2019,  as
Pallister-Killian  Syndrome  Day  in  the  State  of New York; and be it
further

  RESOLVED, That copies of this  Resolution,  suitably  engrossed,  be
transmitted  to  The Honorable Andrew M. Cuomo, Governor of the State of
New York, and the Wood family.