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.
Families of India,
My name is Jamie Harvey. I am International Director and Co-founder of an organization called The MAGIC Foundation, USA which developed many years ago. It is my privilege to congratulate you for establishing The MAGIC Foundation India. I know from experience that this organization will greatly help you and your child, in ways that you cannot yet imagine.
As parents, our children are our world, our purpose and our hearts. To learn that our child has a rare long term medical issue is shocking and heartbreaking. It has been a long time since my children were first diagnosed, (I am now a grandparent). However, those first years were so traumatic that I remember them as if they were yesterday. I truly understand your fears, anger, confusion and grief.
I remember when my first child was diagnosed, I panicked. I began to study everything I could learn about the condition. I was starving for information. And despite my hesitancy, I began to communicate with other parents and share experiences. These “conversations” turned out to be much more important than I would realize until years later.
Talking helped us with the obvious…
a) Learn from other parents experiences so that we could make the best medical and school decisions.
But talking also helped with the less obvious….
b) As the old saying goes: Actions speak louder than words. This saying, is very true. Not only did those early conversations lead me to a path of developing a group like yours in the USA called The MAGIC Foundation, but they also showed to my children that they were important! I was not embarrassed of them. They were the strongest of us all and I was proud of them. This behavior gave them a confidence they would rely upon for their lifetime. They “felt” important and special rather than weird and broken. Now to be honest, we did not go around to everyone talking about these issues, it was primarily family, our organization activity meetings or the doctors office. But when conversations did develop they sensed my no hesitation pride, and they in turn “felt” good about themselves despite the challenges.
The children formed friendships with children who had similar medical issues at MAGIC Foundation social gatherings. Parents met other parents and learned that they could talk safely about sensitive topics. Once a year we would invite a doctor to come talk about certain topics while the children played. These activities were the one time of the year when our kids could proudly talk about shots, being mad about their situation or the latest video games! There was no pressure, they just knew that the other children were “just like me” and they felt good!
To know logically that we are not alone (parents and children alike) because of medical circumstances is quite valuable. Yet, to “feel” a part of something important because you are “special” is more healing than I can explain with words. Imagine 8-year-old children who know their “just like me” friend is going to be at a gathering, and to be so excited…that they run to greet each other with a hug! I have seen this many MANY times! And as an old person, I know and have seen that those friendships last for a lifetime!
As MAGIC was once in the early stages as The MAGIC Foundation India is today, it is exciting to see the opportunities in front of you for the families of India. The MAGIC Foundation India will help build emotional health and happiness for you, your child and your family. The knowledge and experiences you share with each other will help guide you in those important medical decisions throughout the years.
I encourage everyone to please support Deepa Kannan & Shyam Nair in their efforts to build this organization. It is a selfless task which will reward your child and family forever. Whatever assistance you can offer would be fantastic and sincerely appreciated. The MAGIC Foundation India will not succeed if people do not get involved. Stubborn, determined parents like me and Deepa & Shyam are quite welcome!
I wish you all the best of success with this group and look forward to seeing pictures of the smiling children’s faces at an event.
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.