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Voluntary CP Registry by CPASDPakistan

A free Technology can be an only Ray of Hope for many with CP/disability
 When We at Step-Up Pakistan  decided to spread awareness about CP in Pakistan ,Time to time We are going to share Few of our very heart touching stories during our voluntary CP registry in Pakistan.
 We saw a need to set up a database, it  was a huge task and  now it seems even bigger than before, but a one little advertisement in a Sunday NEWS paper brought so much response from allover Pakistan that it made our commitment to this cause more stronger.
 It is rural or city, educated or uneducated desperation and the helplessness of families with CP or ASD like disabilities is not much different, ...We asked a few basic facts and reached to surprising   common scenarios in  these cases ;
  1. Most kids were born in hospitals or hospital like clinics (instead of an  expected at home traditional birth),even in smaller towns.
  2. Most of the kids faced oxygen deficiency at birth, or cried late. 
  3. Most delayed development was noticed  by families within first year of birth.
  4. Most parents repeatedly consulted doctors, even travelled from their towns to big cities.
  5. Most families were not given enough information about the condition or the need of  intervention  and therapy was emphasised.
  6. None of the families were receiving any social welfare income like Social Security/ Khidmat card, despite their disability.
  7. Most parents can not  give their kids required nutritional supplement, therapy,diapers and struggle for medicine , however they feel ashamed and have too much pride to ask or complain about not getting stipend etc.
  8. Only parents with more educated back grounds understand their child's condition, however lack of awareness , guidance and system holds them back or make them to think about migration, to developed  countries.
  9. Families which are privileged and educated  enough to get information still struggle and usually get disappointed in getting rehabilitative and sincere medical guidance especially if they are in remote towns.
  10. A simple word like CP is not given to them. These parents are ignored and mislead ,to a level of criminal  negligence.  

NOTE:   It is not about cure and treatment , frustration is due to negligence of medical doctors at the time of birth, or later not intervening when delay happens, irony of the health care  situation is  cold and criminal, despite a net work of  big specialised children hospitals under government, with supposedly free treatment parents have to spend huge amount of money on doctors visits, to specialists and children hospitals, they are not briefed about the condition, need for therapy, or rehabilitative services no suggestions to followup were made, prescriptions are written in English with technical terms which only a medical professional can understand. 

When a father of  6 years old  boy 

 with delayed development and an un-diagnosed disability is told his story of struggle in  sheer frustration , in this case this poor father was fooled for 5 years , from expensive tests to over the counter tonics were to fix  their child who was developmentally delayed since his infancy 
Parents of CP kids in Pakistan talking about their struggle

  •  When a father of a 12 years old girl asks for guidance
  • She cant talk, sit or walk, Her life is limited to a bed, no formal assessment is done, she never had any therapy yet, apparently she understands every thing  but never given chance to get education,or speech assessment..... Unfortunately this family lives in  a small town of #Sindh which is not much ready for rehabilitative services yet.



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