In Conversation with Angelman Foundation India

In Conversation with Angelman Foundation India

In this wall of fame series, we are in conversation with Mrs. Pooja Joshi Bhadrige, Founder and Director of Angelman Foundation India (https://angelmanfoundation.in/).  Angelman Foundation India is a one-of-a-kind organization for children diagnosed with Angelman Syndrome. The organization is working tirelessly since 2017 to support children and their parents on their journey with Angelman Syndrome. Here are a few excerpts from our conversation.

Picture: Mrs. and Mr. Bhadrige with their son Yug

 Q. Please share with us the story behind “Angelman Foundation India” 

God gives special children to special parents. This is a saying that most people use while consoling a newly diagnosed special parent.

But when we (Swapnil and myself), first got to know about Yug’s diagnosis, we didn’t feel special at all. We thought it was the end of everything. It took us a while to come to terms.

Picture: Mrs. and Mr. Bhadrige

I am a banker by profession. I worked as a deputy manager in Saraswat Bank.

So as time passed, Yug’s doctors and therapists believed that I should be with him 24/7 for his progress.

So, there I was, torn between my highly paying and respectable bank job and being a full-time mother and a caregiver to Yug. I decided to be the latter.

As Yug grew both size-wise and age-wise, I grew too, as a mother and as a person.

Over a period of time, I started to realize that there is more to this. What is it that makes me special? Is it because Yug is a special child or is it something else?

I told myself, that I don’t want to be just a special parent. I want to change other people’s perspectives about special children and positively impact their lives.

That marked the beginning of my actual journey. I quit my job. (Many of the parents and doctors still don’t believe that I did that). But yes, I did. I knew exactly what I wanted to do.

The Angelman syndrome foundation in Chicago is the largest and the oldest foundation for Angelman kids in the world.  As they say, a worried mother does better research than CBI, I started my research on Angelman syndrome. I could not find anything in India. Frustrated, I thought nothing could be done since there is no website for Angelman kids in India. So now I was a full-time mother to Yug, without an actual paying job and sleep-deprived since sleep is rare in Angelman kids.

One night as I was struggling with Yug’s sleep, I decided to email the executive director of the ASF Chicago, for setting up a foundation here in India. I did that and forgot about it. I didn’t think that I would get a response from the other side but I did.

3 days after my mail, I got a positive response from Eileen Braun the executive director of ASF.

She suggested that we should connect on Skype and she will guide me further.

She suggested I start a website first and then gradually form a support group of parents of Angelman kids.

After a period of 6 months, on 19th may 2017 (Yug’s 3rd birthday) my website www.angelmanfoundation.in was launched.

But I knew, only a website was not enough.

I wanted to create awareness about Angelman syndrome in India.

So, I formed a WhatsApp group with 75 members and counting.

Last year the foundation got registered as Angelman Foundation India and it is an exclusive foundation for Angelman parents and kids.

Q. What is the vision and mission of “Angelman Foundation India”? 

  • The main motto of the foundation is spreading awareness.
  • To Plan and organize workshops and conferences on Angelman Syndrome for Angelman parents.
  • Raising funds for needy special parents to buy equipment, operation charges, doctor fees, therapy fees, etc.
  • Build a respite care center for Angelman kids and parents.
  • Set up clinical trials in India for finding a cure for Angelman Syndrome.
  • Set up an all-exclusive Angelman Syndrome clinic in India.

– Building a database of doctors related to Angelman Syndrome.

Q. What are some of the services that the foundation provides? 

AFI regularly conducts Webinars on different AS-related topics. We have done webinars on genetics, neurology, dental issues in AS, diet for AS kids, etc.

Picture: Webinar organized by the foundation

Q. How does the foundation support caregivers? 

Most caregivers are parents of AS children. We at AFI believe that special parents always need someone to talk to, someone who can understand their situation, someone who is going through the same experience. At the organization, we try to talk to as many parents as possible to make them feel better about their situation.

Q. What would you like to tell caregivers of persons with Angelman Syndrome?

Staying positive is the key to a better life. I know it is very difficult. But unless the parents are happy, they cannot pass it to their children. Children will achieve a great milestone if he/ she is happy inside. Taking guilt-free breaks, talking it out, meeting friends, spending quality time with your spouse. I just want to tell the parents and caregivers ‘stay happy stay positive.

You can contact Angelman Foundation India on:

Instagram:

www.instagram.com/angelmanfoundationindia

Facebook:

www.facebook.com/angelmanfoundationindia

Website URL:

www.angelmanfoundation.in

 

Recommend someone you know for the 1SpecialPlace Wall of Fame! Mail us at info@1specialplace.com

 

Ayesha Anjum
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(1 Comment)

  • Shravanee Nishikant Karnik

    All in all, a complete article I’ve read. Superb!!

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