Cerebral Palsy disorder

Although an institution like ‘Samvedna’ was always in my dreams but not in the form and shape as it has come forward ten years back. History behind origin of this trust is not so old. Few year back when myself and my senior used to see the children affected with cerebral palsy , we always felt very sorry in informing the parents that this child is affected by cerebral palsy and he or she will remain disable for whole life and there is no treatment available so far as was known to us. So these children were sent to rehabilitation center without predictable prognosis. We surgeons were worried about unpredictable outcome from surgeries. At those moments most of the parents used to give blank look after hearing negative responses and they started thinking that no one can help my child. But this was not the complete truth.

This fact was realized few years back when I was thinking that god can not be so angree with these children. I started treating these children with combination of various modalities of treatment. This included vigorous therapy programme with braces, corrective plaster, botulinum toxin injection and surgeries. The responses were very encouraging and beyond imagination. Before starting the trust I was able to manage more than 1000 children with the help of my therapist colleague Dr. Kadeer & Dr Vinai. With this concept in mind we like minded people assembled together on precious day of 20th Dec 2005 at Allahabad collectorate and registered a trust named “SAMVEDNA”. We developed a rehabilitation center with all modern facility so that all medical treatment can be provided by dedicated team of various specialist under one roof without giving any extra burden to these children’s parent. We have got 19 fully trained therapists under super vision of Dr Kadeer. On every Saturday consultants gather in the trust and give their expert opinion after proper evaluation of each children by team of therapist.

During this last Six years period I recognized many facts:

  •   Cerebral palsy children are not only physically disable but also affected by other problems like speech, hearing, vision, nutritional and seizure disorder so these children require multidisciplinary approach under one roof.
  •   Cerebral palsy affects all socioeconomic status and requires long term treatment, so poor and middle class people can’t afford costly treatment.
  •   Most of the time the child is very precious for that family and family passes through lots of mental stress and financial problem due to unpredictable outcome.
  •   Now with eradication of polio on its way and increasing number of premature children saved by ICU care the cerebral palsy has become a single major cause of major physical disability in childhood and they can be recognized in early phase so that early intervention can be started for better recovery.
  •   They need right direction with loving care and advice from various specialists at a single place so that they can save time from running to various places.
  •   With advancement in research and technology there was need of a place where latest treatment can be available for these special children of society.
  •   God can never be so unkind. These children’s brain always has some area which would not have been damaged and can be better utilized. Their capability can be nursed in better way so that they can be a part of the society. It will be better to have a look at their ability not the disability. Every child should be given a chance for improvement.
  •   Even now the children with any kind of disability are being seen as god’s curse in most part of the India and they have been neglected and kept in side of home without taking any medical advice ,so above all most important thing is the knowledge update of society, media and parents in the care of these children.
  • Our therapists are not so fully trained in management of cerebral palsy so they should be trained at places where they can be trained in a better way.
  •   Group therapy in this childhood problem let to better understanding of their child problem by parents. Group interaction between parents helps in— a) Understanding problems in correct manner b) To ease the children psychologically c) They can discus their family problem related with child and methods of coping up
  •   Parents training in therapy programme is very important to carry out therapy at home
  •   CP home with all facilities can be a boon for these children so that they can stay with their parents for few month and they can be trained in home therapy programme to carry out routine activity in better manner.

In last Eight years, 1500 children affected with various kinds of physical disability has been registered in the trust and got success in making more than 80% children ambulatory. Most of the children has shown very good response . Response was much better in the child where family support was very good and child came to center before age of 2 year . On average every day more than 90 children are coming to samvedna therapy center for therapy. These children are coming to trust from various parts of north India. We also provide Temporary stay arrangement for parents coming from distance places and training of parents for their home based therapy programmer.  We have also given short term training to 44 young therapist. We are able to reach different corner of northern India by organizing 120 public and media awareness programmer and camp, in which more than 15000 children has been benefited. The trust has got excellent recognition by all print and electronic media for its work in the field of cerebral palsy. This is an appeal to public for any guidance for improvement and donation so we can make a great change in the future of these children.

Trust has successfully organised three workshop & a national conference on cerebral palsy (CPCON2010) on 4th-5th Dec 2010 ,national symposia for parents of children with cerebral palsy on 27th November 2011, National Workshop on problem solving approach in management of children with cerebral palsy for therapist working in he field of cerebral palsy on 18th Nov 2012 at prayag sangeet samiti, civil line, Allahabad, workshop on Advance Rehab Technology in children with cerebral palsy at Allahabad on 16th Nov 2014, national Symposium of empowerment of parent’s family of cerebral palsy affected individual at Allahabad on 22nd Nov 2015.This meeting has giving us new insight in this social issue.
all the events were attended by unexpected huge gathering from all over India. That was amazing response from all corner of society. since 2011 we are celebrating national cerebral palsy day on 3th Oct. we have celebrate this day in year 2012 by the collaboration of district disability department by the organizing symposia for school authority and CP fair for children with cerebral palsy, in 2014 with the collaboration of MNNIT, Allahabad by the organizing sport event , painting , sculpture making competition for children with cerebral palsy along with their AVISKAR programme & in 2015 by the collaboration of utter pradesh Police, Allahabad . We have also also organised 8 workshop in different part of india for therapist & specialist. Trust has decided to arrange this type of national CME/ conference every year so that more and more number of our worker can trained in this advance field of treatment modality so that we can show some light in life of our precious children. We require support from all corner of society.