About The Ujaas Foundation

The Ujaas Foundation is registered as a public charitable trust with its office located at New Garia, Kolkata. The Foundation has been operational since September, 2015. This social initiative has been approved from the Office of IT commissioner under the provisions of Article 80G and Article 12A of IT act. The Ujaas Foundation also referred to as UJF, has been working mostly for the benefit of families affected by critical paediatric conditions like Leukaemia. The foundation focuses on creating accessible knowledge repository and offer high quality counselling services to the care givers of paediatric leukaemia. The support mechanism to the beneficiary families, is delinked from the projected prognosis of a child and is offered according to availability of necessary support resources.

The organisation functions from the funding it receives through its donor panel and from active support of its community volunteers network. The Foundation doesn’t retain any fraction from the donations it receives from its case specific campaigns. The operational expenses are met from its corpus earnings and untied financial support from its donors ,from time to time. The operating policy of The Ujaas Foundation is non-discriminatory with its beneficiaries and other stake holders. The foundation does not have any religious or political affiliation. UJF is a gender neutral organisation and also doesn’t carry any domiciliary status linked bias while working with its stakeholders.

Treatment of Leukaemia

Leukaemia is curable. Eminently so ! Globally, the survival rate of ALL-B type Leukaemia is touching 90% now. In India, it would be little less because of the inconsistency and deficiency in the supporting ecosystem for the treatment. However, the treatment efficacy has gone through dramatic improvement since the last three decades, raising the hope of so many families affected by paediatric leukemias across the country.

This is specially for the parents and other caregivers in the family to note. While we all hope and wish well for the little one, a favourable outcome is heavily dependent on your abilities to cope with stress and promptness to identify and respond to critical emergencies. The journey ahead will be like a marathon and definitely a difficult test of your resilience, patience and optimism. The treatment plan as advised by your paediatric oncologist or haematologist, will be most likely a protocol that is customised to suit your child’s specific clinical conditions and will span over two years or more.

The top 10 Key Points You Must Remember

  1. 1. Identify the treatment centre for your kid as soon as possible once the diagnosis of leukaemia is confirmed. Evaluate variables like support infrastructure, experience and relevant qualification of the medical team, proximity, affordability and actively seek opinion of the family physician or the paediatrician of your child.

  2. 2. Organise your financial resources as per the financial estimates given by your child’s haematologist or from the healthcare facility selected for the treatment .

  3. 3. You can add a 15-20% margin on the estimates to account for clinical contingencies. Please remember to plan your cash flow across the treatment period of 30-36 months ahead of you .

  4. 4. It is important that you define and share the responsibilities of your family’s finances, treatment supervision and all other domestic chores with your spouse and/or other primary caregivers beforehand with absolute clarity to avoid nasty surprises in future.

  5. 5. Plan your stay within 10 km radial distance of the treatment facility so that you can take your child to the hospital ideally within 30 mins incase of a clinical emergency.

  6. 6. Ensure highest level of cleanliness of the room where your child would be staying during the treatment period . The same rules applies for all caregivers in maintaining their personal hygiene. All clothing, linen, cooking and serving utensils should be washed and cleaned everyday with missionary zeal.

  7. 7. Stay focused on the nutrition your child is receiving. Regularly monitor your kid’s body weight and consult your dietitian accordingly. Ensure complete avoidance of street food or any edible product that is not packaged or not steaming hot and freshly cooked.

  8. 8. Identify and keep your panel of blood and platelet donors in confidence and well informed beforehand. Your kid is going to require many units of blood and platelet transfusion during the course of treatment.

  9. 9. Do not discuss clinical issues and related concerns with your child or keeping her/him in audience. Seek guidance from your counsellor on what should be discussed with your kid and how.

  10. 10. Lastly, only pay heed to information from qualified sources backed by facts and not to anything that might be completely conditioned by individual perceptions of the peer group caregivers of non clinical background.Please don’t be shy to check with your child’s physician or counsellor about any doubt you might have about the treatment.