We are all Jérôme Lejeune


KK T21

“I  want  to  do  something  to  help  research  because  it’s  urgent … and  because  down  syndrome persons  make  me  a  better person.”

How  do  you  know  the  Jerome  Lejeune  Foundation  &  the  work  of  Jerome  Lejeune ?

I’ve   injured  my  hip  and   have  had  to  take  a  break  with  my  dancing.  Between  the  surgery  and the recovery,  I won’t  be able  to  dance  for  almost  6  months.  Instead  of  being  upset  with  my situation,  I’ve come  to  see  it  as something  very positive.  I  suddenly  am  presented  with  the opportunity  to  finally  do things  I’ve  always  wanted  to  do,  but  have  never  had  the  time for.

This time  is  a  gift,  and  I  don’t  want to  waste  a  minute  of  it!   I’ve   wanted  to  do  something useful, something  for others.  I  began independently   researching   topics  I  care  about,  like  Down Syndrome. Through  my  research  and reading,  I discovered  the  work  of  Pr  Jerome  Lejeune.  Not  only was  I  in awe  of  his  brilliance  and scientific  discoveries,  but  completely touched  by  him  as  a  person and  his work  with  those  affected  by Down  Syndrome.  As  I  read  and  learned  more  about   him, I only became  more  passionate  and convinced  by  his  kindness  and  honesty.   Constantly  striving  for   truth, regardless  the  social and professional  risks,  he  never  compromised  his  integrity.  He  remained loyal   to his  science,  and  to  his patients  and  the children  that  he  cared  so  much  about.  To  become affiliated  with  the  work  and  legacy of  such  a  remarkable  man  is  truly  an honor.  To  be  a  part  of this,  to lend  a  helping  hand  in  anyway possible,  is  inspiring.   I  was  very  fortunate  to  meet  with  the Foundation  in  the  US,  I  knew  immediately that  I  wanted  to  do  something  to  help  the  work  of the Foundation.

You  say you’re  interested  about  Down  Syndrom,  why?

It’s  perhaps  thanks  to  my  mum.  She  was  a  teacher  for  children  with  special needs.  She  taught   a lot  of children  with  Down Syndrome.  I  love  hanging  out  with  them.  I  feel  that  children  with  Down Syndrome inspire  and  challenge  me  to  be  a  better person.  I  can  spend  the  whole  day  with  them,  playing, chatting  or  listening,  it’s  easy.  They  are  so  real,  so  untainted  by  all of  the  negative  in  the world,  and  so open,  honest,  and  joyful.  They’re  so  easy  to  be  around.  When  I  was  dancing  in Boston,  I  helped  with  a special  adaptative  dance  programm  for  children  with  Down  Syndrome.  Once a  week,  we  were ancing together.  I  loved  those  moments.  When  I  left  Boston  for  Russia,  it  was hard  for  me  to  leave my  family  of  course  but  also to  stop  this  class.  Because  these  moments  were so  full  of  joy.   I  tried  to find  some  kind  of  similar  classes  in  Russia  but unfortunately   it  doesn’t exist.

KK JLAnd  why  do  you  want  to  help  the  medical  research?

Because  it’s  urgent!  Many  people  don’t know  the  disability,  and  in  fact,  I  believe  they  are  scared of  it. They  don’t  even  know  that  Pr.  Lejeune  is  the  father  of modern  genetics.  People  aren’t  aware  of  the details.  They  don’t  understand  that  having  an  extra  chromosome  isn’t  a  crime, that  medical research  is making  big  improvements  to  find  a  treatment,   and  that  we  must  help  the  research. It’s urgent  and very  important.  By  raising  an  awareness,  and  helping  the  research,  we  could  change the way  people see  this  disability.

Changing  the  way  people  are  looking  at  Down  Syndrom,  is  that  what  you  want  to  do  as  an ambassador  of  the  Foundation ?

Yes,  I  think  the  first  step  to  changing  peoples  hearts  is  to  fix  the  images  and  opinions  that  they have  in their  minds.   Our society  is  obsessed  with  image,  it’s  sad  but  unfortunately,   it’s  the  way  it is.   If  picture of  a  ballerina  dancing  with  a  Down Syndrome  child  could  help  people  to  say  “this  little girl  may  have  an extra-­‐chromosome,  but  she’s  like  me  full  of  dreams  and passion”,  it’ll  be  good enough.  Therefore  I’m representing  the  Foundation,  through  the  image  of  a  ballerina.  I’d  like  to  do much  more  but  it’s  a  good start.

What  does  it  mean  for  you  to  be  an  ambassador?

This  is  very  important  to  me,  and  I  am happy  to  do  it.  As  I  said  before,  to  become  affiliated to the work  of  Jerome  Lejeune,  in  anyway,  is  an  honor.  We  must continue  his  work  by  helping  the children, to  support  them  and  to  defend  them,  since  they  do  not  have  a  voice.   We must  support genetic research.   I  really  want  to  do  something  concrete,  and  to  keep  exploring  ways  that  I  can personally lend  my assistance  or  talents.   And  to  learn   from  those  precious  individuals  with  special needs  about joy  and  simplicity.  It’s  the beginning  of  a  great  collaboration  with  the  Foundation  for me  and  I’ll  do everything  I  can,  to  help  the  Foundation.

And  to start  the  20 th  anniversary,  do  you  have  something  special  to  say?

Yes.  We  are  all  little  Jerome  Lejeunes  :  we  have  to defend  and  take  care  of   these  children,and to  help genetic  research !