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.
Deepa Kannan, who has an 8-year-old son suffering from a rare condition called Congenital Adrenal Hyperplasia (CAH), bares her heart and mind about all her family has been through in trying to cope with the disorder and also about how she is spearheading an awareness movement for affected parents in India.
When a 15-day-old baby, who had a bout of mild diarrhoea and vomiting became severely dehydrated, the parents, though worried, did not sense something could be seriously wrong. However, they were shocked when their doctor diagnosed the baby with Congenital Adrenal Hyperplasia (CAH).
Note: This article was published before the formation of The MAGIC Foundation India
Here’s an incredible story of a mum who has perhaps been subjected to numerous judgements, opinions on her choices and decisions taken in life. It has surely not made her weak but every step has made her amazingly strong. Deepa Kannan of Yogasopanam Wellness is a yoga teacher-entrepreneur and a mum to a child who has a very rare health condition. Deepa is someone who is married for the second time and with Mums and Stories she shares her dreams, her life and on parenting her child- Omkar.
The CARES Foundation is a not-for-profit organisation in New Jersey which was set up for the reserach, education and support of Congenital Adrenal Hyperplasia. They have declared June as CAH awareness month and to increase the awareness of CAH, each day the Cares Foundation writes stories about someone who has the condition or who is working towards it. On June 24th, 2016, the Cares Foundation has written about Omkar. All the information shared by Omkar is to say that although he has CAH, he is so much more. There is a video as well.
Children fail to grow for a variety of reasons. Hormones, genetics, sleep, nutrition, general health and exercise are all factors for normal growth. If you suspect that your child is not growing normally, you are in the right place!
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 (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.
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 (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.
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.
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.
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The MAGIC Foundation India group on Facebook is a closed group and is for discussion and sharing of information to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth. This is a safe place for parents to exchange and seek information that might help them deal with the problem. Note that posts which are not relevant to disorders, syndromes and diseases that affect a child's growth and which are advertisements for sales of products, services or groups will be deleted and the person posting the message will be removed from the group without notice. If you wish to join this group: