Taabish’s Story – Thriving with Thalassemia Major
Thriving with Thalassemia Major
“I believe it’s the quality of life, it doesn’t matter how long I may live, but if I live well, I would have lived well. I believe these children also think the same way and want fun, want enjoyment, want creativity, want to live life to the fullest as much as they can. ” Prof Mamta Manglani, Head of Pediatrics at Sion Hospital, Mumbai, India
“Taabish is a 17 year old boy who has been with us since 12 months of age and he’s regularly coming for transfusions” says Prof Manglani.
Taabish has Thalassemia Major and requires a blood transfusion every 15 days.
Thalassemia is a genetic disorder that affects the production of haemoglobin, the oxygen-carring protein in red blood cells. Without ongoing treatment, Thalassemia cause severe anemia and death. It is the most common inherited blood disorder in the world. To develop Thalessamia Major both parents need to be carriers and in every pregnancy there is a 25% risk of passing the disease on to the child. There is testing available and parents can have prenatal diagnosis if they are aware of the risk.
Taabish’s sister is also has Thalassemia Major but was not diagnosed until she was four years old and suffering from anemia.
“One can imagine the psychological trauma to not just to the child but to the parents and the family at large.” Prof Manglani, “palliative care is giving them , physical, emotional, social, spiritual support and through various art based therapies these supports can be offered to children and their parents, caregivers, guardians etc.”
“Since we have a large number of these children in our city, in our country, we thought it is appropriate to give them daycare. So these children come in a comfortable environment to have their blood collected, blood is sent for cross match and they receive their transfusions and go home by evening.”
“so it’s a happy thing for them because they meet their friends they don’t have to stay overnight in the hospital. We want to make the experience as enjoyable as possible for the children. That’s the reason we came up with this center with the donation from and NGO.”
“So there is no question, it is a very established fact that unless you have this palliative care in place for those who have chronic diseases or life threatening illnesses, you not going to be able to provide them with the quality that they deserve. So I would appeal to the government that this is part of medical care not something additional, this has to be there, it is a compulsory thing. It’s not optional and therefore have it everywhere.” Prof Manglani.
Please consider supporting the important work of Think Foundation by donating to www.thinkfoundation.org
– Taabish- Thalassemia day care patient
– Prof Mamta Manglani, Head of Pediatrics at Sion Hospital, Mumbai, India
– Dr Pradnya Talawadekar, Indian children’s Palliative Care Project
This week we are pleased to be supporting the release of a short film that encourages sharing skills and knowledge of children’s palliative care internationally. This film explains what we can learn together by international linking and...read more
Care Beyond Cure – Ondine's Syndrome “One of the things I remember when we first met Matteo was the phrase ‘we are giving you a baby who is alive’ that phrase meant everything and nothing, it meant that Matteo could die at anytime. Children...read more
Hope and Hyperinsulinism in infants “Don’t be afraid that things like this happen, I believe that every obstacle that is given to you in life is there so you can overcome it and become stronger.” Lana Krupenrova, Anastassia’s Mother....read more
"Just the sheer fact that someone as high profile as HRH Raja Zarith or HRH The Duchess of Cambridge are both serious and passionate about this movement automatically makes it a subject worth discussing." Gail Featherstone, Wife of the...read more
“When you realize how uncertain life is , you do begin to appreciate the value or family and friendships and enjoy those moments while you have them because you don’t know what’s around the corner,” Simon Waring. Marmaduke’s Story highlights...read more
"The term palliative care often is perceived by some of my colleagues and some parents as giving up hope or working with the death-and-dying squad. What they may not understand is that clearly using palliative care means that kids actually...read more
“The death of a child is considered the worst loss you can go through and I think that’s particularly true of the families I’ve worked with ” Natasha Samy, Social Worker & Bereavement Counsellor. This short film tells the story of...read more
“Paediatric palliative care in its essence is a response to the suffering of a child and a family who are facing life-threatening or life-limiting conditions It’s holistic, looking at the body, mind and spirit within the social and cultural...read more