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Johanna : The rett syndrome warrior
Being diagnosed with rett syndrome has resulted in the beginning of an incredible journey for this 6-year-old vibrant positive girl, JOHANNA JERRY THOMPSON.
*Now WHAT IS RETT SYNDROME?*
Rett syndrome is a progressive neurodevelopmental disorder that almost exclusively affects females. Only in rare cases are males affected. Infants with Rett syndrome generally develop normally for about 7 to 18 months after birth. At this point, they lose previously acquired skills (developmental regression) such as purposeful hand movements and the ability to communicate. Rett syndrome is estimated to affect one in every 10,000 to 15,000 live female births worldwide.
*Rett syndrome is not autism*
Johanna, who has Rett syndrome was almost diagnosed with autism because the symptoms – jerky moments, developmental delay, age at which changes were noticed – are all similar. The therapies and treatments of autism must not be forced in a child with Rett, because they cannot help it – all you will end up with is a frustrated, depressed child.
Johanna’s family had identified that she has a passion for music which keeps her engaged through out the day. Because of her strong interests in dance therapy and music, the parents got inspired to create a musical video with one of her favourite songs,” CHINNA CHINNA AASAI” composed by our one and only maestro AR RAHMAN.
So as a family, they all did their part by singing and doing the role play. This video was put into reality by the support of CATCH UP MEDIA and NELSON MUSIC who has given wings to the dreams of Johanna.
The video depicts the enjoyable moments in Johanna’s life like beaches, outdoors and socialising with family and friends. You tube link :https://youtu.be/6vJ4yN_iXLg
Johanna being a strong advocate of inclusion and acceptance for people of determination, urges all parents to ensure that their kids, have the right exposure for therapeutic interventions and social interactions , that will pave the way for the improvement of their well being.
Through this video, Johanna and family has tried to motivate all parents of POD’s to do what fulfils them, follow their dreams and not to restrict these special angels from exhibiting their talents or interests. Let them enjoy each and every moment of their life.
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