The MAGIC Foundation India, affiliated to The MAGIC Foundation, USA, was set up to spread the awareness of various children’s growth disorders, across India. This website is intended to provide general educational information and to help users more easily access information about children’s growth disorders.
What you are doing is incredibly impressive and important”
Dr. Scott Rivkees, M.D.
The MAGIC Foundation India, affiliated to The MAGIC Foundation in US, and registered as an official trust in India as The MAGIC Trust is an organisation that was set up to spread awareness of various children’s growth disorders, across India. It is a community of parents, grandparents and caregivers that support each other, a space for Paediatricians and Paediatric Endocrinologists to share knowledge, old and new, with each other.
Our mission is to spread the awareness of the conditions called Growth Hormone Deficiency, Congenital Adrenal Hyperplasia, Cushing’s Syndrome, Addison’s, Russel Silver and others, which are rare and so unknown, even in educated circles. It is our way to support parents of these children who go through so many challenges in bringing up a child with a growth disorder, even something as simple as admission to schools, which many parents take for granted with normal children.
Our aim is to support parents and help them to change the mind-set of schools in India, as many of them, refuse admission to these children, or for that matter, probably any child with a Genetic disorder. We hope to play a role in changing this kind of unfair discrimination towards a child, for no fault of theirs. As parents of these children, we also know how expensive it is to raise a child with a growth disorder. From the cost of routine blood work and steroids lifelong, to frequent hospital admissions for infections, diarrhoea, vomiting, viral, seizures, surgeries, trauma or accidents, it is a challenge for many parents. Insurance companies in India have possibly never provided coverage to a child with such conditions. Together, we can work to change these things in the future. To think that if a child with a growth disorder was born to parents who could not afford any of this, even if they were able to diagnose it, is frightening and sad. We hope at some point in the future, to use this Support Community to change this, and to work towards having every child born with a growth disorder live.
At The MAGIC Foundation India, we hope to improve the lives of the child growth disorder community in India through easily available information relevant to India, especially new ones who are lost in a helpless sea of ignorance. We hope to support each other through difficult phases in the lives of our children so that we don’t feel alone. We reach out to all parents of children with growth disorders to come together and make a difference in India, as these conditions are still under served, under supported and not funded. Specialists in India, Paediatric Endocrinologists are so few, that in many places of India, affected families struggle for regular access to one. Due to that, many children with growth disorders, struggle through childhood, mismanaged and improperly treated, leading to many problems.
Our Vision for The MAGIC Foundation India is to work together, with the stellar Medical Advisory Board of Paediatric Endocrinologists and bring greater change for children’s growth disorders.
People keep saying “Oh it’s so unfortunate that he was born this way.”
I reply, “but he is the reason for MAGIC coming to India.”
Founder – The MAGIC Foundation India
Congenital Adrenal Hyperplasia
Congenital Adrenal Hyperplasia is an autosomal recessive genetic disorder, which means that it affects males and females in equal numbers, and that it requires both parents to pass on a gene in order for it to manifest as a disease. For a child to be born with any form of CAH, both parents must carry a gene for the disorder.
Growth Hormone Deficiency
Growth hormone (GH) is a protein made by the pituitary gland and released into the blood in brief pulses. The major way that GH promotes growth is by increasing levels of the hormone, insulin-like growth factor-1 (IGF-1), and its carrier protein, IGF binding protein-3 (IGFBP-3), in the blood.
Optic Nerve Hypoplasia
A child with the Syndrome of Optic Nerve Hypoplasia, also known as Septo Optic Dysplasia or DeMorsiers Syndrome, has under-developed optic nerves. The optic nerves carry messages from the eye to the brain. ONH is the single leading cause of blindness in infants and toddlers.
Russell Silver Syndrome
Russell-Silver syndrome (or Silver-Russell syndrome) is a rare genetic disorder characterized by delayed growth in-utero (IUGR) that spares head growth (meaning the newborn has a head size that is large for his body) and ongoing postnatal growth failure.
Small for Gestational Age
SGA (small for gestational age) generally describes any infant whose birth weight and/or birth length was less than the 3rd percentile, adjusted for prematurity (gestational age). Between 3% and 10% of live births each year are diagnosed as SGA.
Turner’s Syndrome occurs in 1 in 2,500 live female births. Approximately 98% of pregnancies with Turner’s Syndrome abort spontaneously and approximately 10% of fetuses from pregnancies that have spontaneously aborted have Turner’s Syndrome.
Connect with us!
We have created a Facebook page called Omkar’s Journey with Congenital Adrenal Hyperplasia to chronicle all possible events and scenarios in the life of a child with CAH, with a view to let new parents know what to expect.
➤ Step 1: Search for the group page on Facebook.
➤ Step 2: Please request to join.
➤ Step 3: Send a message to the Admin or an email to
[email protected] and let us know why you are interested in joining this group.