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: Founders
Shyam and Deepa are renowned Yoga teachers in Bangalore and living an idyllic life on a farm amidst the elephant corridor.
Their son, Omkar, was born on December 2nd 2009 at Manipal Hospital Bangalore.
He fell seriously ill when he was just three weeks old and they soon discovered that he had an Adrenal Disorder – Congenital Adrenal Hyperplasia, also known as CAH and that he would be steroid-dependent for life.
They were shattered and the word steroid brought in panic and fears of side effects. They were also told that every episode of crisis like vomiting, diarrhea, high fevers, and infections could be potentially dangerous and even fatal and that all these would involve a hospital stay with IV and double dose of steroids as he would never be able to cope with stress, physical or emotional.
They went through every emotion from denial to anger to helplessness and panic attacks. Emerging from these emotions was the thought that there must be some purpose to why Omkar was born this way. They educated themselves on CAH and soon realized that there was no proper support group in India for parents whose children have CAH. Deepa and Shyam are blessed to have a wonderful paediatric endocrinologist who guided them at every step – Dr. Shaila Bhattacharyya. They started CAH Support India – a group on Facebook dedicated to providing as much information as possible on CAH. Deepa setup a Facebook page, a blog that is dedicated to Omkar’s Journey with Congenital Adrenal Hyperplasia – a very touching and personal account of how difficult it is for a parent to deal with different situations in the life of a CAH child.
What started as CAH Support grew much bigger. Affiliated to The MAGIC Foundation, USA, a renowned name in Endocrine patient support, Shyam and Deepa set up The MAGIC Foundation India, registered officially in India as The MAGIC Trust, to improve support and awareness of many children’s growth disorders, including Cushing’s, Addison’s, Growth Hormone Deficiency, Russel Silver, and to bring about greater change in India. The MAGIC Foundation India also aims to bring about more change in India relevant issues from availability of much required medication, acceptance of children with growth disorders in schools, increasing new born screening and reaching rural India. It hopes that more people can take a step towards bringing about this change. Each one makes a difference and together we can create an ocean of change.
Their thought for parents of children with any growth disorder and for the future of The MAGIC Foundation India:
”For any parent with a newly diagnosed child of a rare condition, allow yourself to go through the emotions that you feel, start to look around and educate yourself. You can also find support groups and manage it like you would manage anything else without becoming bogged down by emotions. We need to educate schools, see that there are emergency medication pouches available at different locations, stick to correct meal times even at school based on medication times. Simultaneously it is a continual process to educate our children about what is good and what is not in something like sports, travel carefully, predict many things and take necessary precautions. It really means to be one step ahead all the time. Our take is that as parents with a child who has a rare condition, avoid guilt or frustration. Look at it philosophically and educate yourself for empowerment. What we envision for this group, here in India, which of course is still in its very nascent form, is one where parents support and share whatever they need to, both from India relevant medical facts, information about India relevant doctors, bringing forward new information about growth disorders from all over the world but applicable to India, sharing tools that help and improve the health of these children so they can avoid multiple crisis, improving and increasing the mandatory testing in hospitals all over India and those that go beyond the renowned large scale ones, and create a massive impact in terms of a nationwide India centric support structure through The MAGIC Foundation India. This is our vision, and in order to make this happen, we encourage support from anyone who is in a position to or who would like to make a difference. To begin with, we ask that parents of children with growth disorders feel that openness to reach out to us, even if they are part of any support group worldwide. Together, we can make that difference. Let this be about building a platform for India.”
Grandmother
“As Omkar’s grandmother, may I say that I had never heard of CAH till he was diagnosed, barely a month after he was born.I felt that I had to know more, and read all I could find about CAH from websites like Magic Foundation, Cares Foundation, Web MD….was intrigued as to why there was nothing in India. Fast forward 7 years and still very little about CAH in India, but hopefully there will be a change with this website.
Acceptance, not denial, blame, guilt should be what family should do. Regular blood tests and dosage of steroids life long is basic to CAH and I am sure Deepa and Shyam will agree with me that , for example, in case they are occasionally not around, they can trust these grandparents to make sure breakfast is on time so that the right dose of medicines can be taken. This is the kind of support that I would like all CAH kids to have from not only grandparents but all the family!”
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 Syndrome
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.
(https://www.facebook.com/groups/433557750183212/)
➤ 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.