Save Shriya

Dear Readers,

I write this post asking for a favor. Please read the entire post with a little patience and consideration.

Shriya is a 2.5 years old baby (born on May 31st, 2010) diagnosed with Gaucher's disease. It is a rare genetic disorder caused by a hereditary deficiency of the enzyme glucosylceramidase, which leads to a collection of fatty material in the spleen, liver, kidneys, lungs, brain, and bone marrow. Little Shriya was diagnosed with Gaucher's Type 1 when she was 3 months old.

Here are the links of the case history and doctor's certificate.

http://saveshriya.com/CaseHistory.html

http://saveshriya.com/DoctorCertificate.html

Treatment

• Enzyme Replacement Therapy (ERT): This is the only life saving treatment available world wide. ERT replaces the deficient enzyme with artificial enzymes. These replacement enzymes are administered in an outpatient procedure through a vein (intravenously), typically in high doses at two-week intervals.

• Bone Marrow Transplantation (BMT): This surgical procedure has been used for severe cases of Gaucher's disease. In this technique, blood-forming cells that have been damaged by Gaucher's are removed and replaced, which can reverse many of Gaucher's signs and symptoms. This is a high risk treatment and is very rarely administered.

Monthly ERT is the only treatment option available for Shriya and she needs to undergo this at least until she is 18 after which oral medication can be considered. This enzyme needs to be imported from USA and costs 1650 USD and the dosage (and hence the cost) will change as Shriya grows up. The invoices till May 2012 are uploaded on the website. I have the invoices for the month of July if you want. And you can always request for the latest invoice from Shriya's parents and they are always prompt in replying. I am saying this based on my own personal experience. 

How can you help?

1. The biggest help this family needs at this time is financial. Any sort of financial help is most welcome. If you can contribute 100 USD great! If you can contribute 100 INR great! No amount is too big or too small. I have posted the donation details at the end of this post. I have used the online transfer without any hassles. I have always received prompt reply from Shriya's parents with proper acknowledgement.

*EDIT October 4th, 2012 - Fortis foundation has started a twitter campaign for Shriya. Fortis has pledged to donate Rs.10/- for every tweet with the tag #saveshriya. This is the website - https://saveshriya.fortishealthcare.com/. All you have to do is go to this link, click on tweet and submit. You do not even have to draft a message. It's all done for you. You can post as many, RT as many times. All you have to do is click. Easy, right? I have decided to set aside a time and RT 10 times a week. That's a 100 bucks a week from one person. If we can sustain only this, that will be more than enough! Yeah, that easy!

2. If you are a doctor or someone who can help with the medicine (enzyme) please do reach out to Shriya's parents. I am sure any and all information will be very useful for them.

3. Spread the word! Please spread the word! I can understand if you cannot help financially. Sometimes, we just cannot. But if you are reading this blog, I am sure, you can also copy paste this information on your twitter/Facebook/blog accounts and send it to your local charity chapters. Here is the Facebook group link. 

4. If you are in Delhi, you can make time to visit Shriya and just share your precious time with the little girl at the AIIMS whenever she gets in there for her treatment. I am sure you will feel as good as the Sethis. 

5. Whatever you can think of!

I assure you the validity of this post and all the links posted here. I have verified this personally and I truly believe in the cause. I am sure you will do everything you can. :-)

THANK YOU!! 

************************

Donations

Please make your donations in the name of SHRIYA SETHI

Account No. 911010065008502, 

Axis Bank Ltd,

A-13 Swasthya Vihar, Vikas Marg 

New Delhi-110092, India. 

IFS CODE:  UTIB0000055

Contribution in Foreign Currency can be sent to the PAYPAL Account: jay_hcl@yahoo.com

Please also mail your contribution details to shivanisethi0206@gmail.com for  tracking and acknowledgement purpose.

http://saveshriya.com/Donations.html

Contacts

Jaydeep Sethi (Father) E-mail ID: jay_hcl@yahoo.com Phone No: +91-9958284420

Shivani Sethi (Mother) E-mail ID: shivanisethi0206@gmail.com Phone No: +91-9810033778

Railgadi..

I am travelling home to Bhopal. J I had big plans for this trip but as it goes with planning, most of my plans are bombed. So I thought a simple trip to home is always harmless. Let’s make it.

So here I am sitting in Rajdhani Express heading to Bhopal. Yeah, the best train in India. A lot of people, specially my parents and especially my dad, are not too fond of traveling in the AC coaches. They say that the tainted windows and curtained partitions rob the “experience” of traveling Indian Railways and you can get this “experience” only when you are traveling in the sleeper coach. I have a theory on this, though. You see, while a lot of Indians are making a lot of money, the “core” middle class “Indianness” remains the same. The “Third AC” is the new sleeper class and the “experience” pretty much remains the same.

Take for example, this trip. Being my dad’s daughter, I was the first one to get on the train after being almost an hour and a half early to the railway station. It is a matter of pride and habit to do so which I doubt I will be able to get rid of in this lifetime. Once I am on and comfortably settled in my seat (after taking the maximum space possible for my two teeny weeny bags), some others start getting on as well. Three young men get on first and one of them, unfortunately for him, has a broken shoulder. His friends made fun of him constantly and at the same time ensured that he's always comfortable. The young men are speaking excellent Hindi. At the same time, their informal tone is unmistakably “Bhopali”. And then the most interesting person of this trip boards the train. He must be in his late 50s and let’s call him Uncle ji. Our Uncle ji has graying hair but he has been given a middle berth, which he understandably doesn’t like. He asks the young man with broken shoulder if he can take his seat. That’s the first thing you always do in Indian trains. You exchange your seats. You “adjust”. Our young man’s plaster is hidden under his shirt and he explains why he can’t change the seat. Our Uncle ji gets very furious. Not because he is stuck on the middle berth, but because the young one was so callous to even think of wearing a shirt on when he has a broken shoulder. To shirt kyun pehen rakhi hai? Pardarsan (pradarshan) karo nahi to huemin kya pata ki tumhara haath toota hai. The young man did the pardarsan alright for the rest of the journey. Our Uncle ji decides to step out for a while. Everyone around me exchange meaningful glances to not “encourage” this Uncle ji.

As our Uncle ji is coming back, he stops at the adjacent aisle and asks a gentleman where he is going. Second rule of train travel – It is your primary business and personal duty to know where everyone gets down. The gentleman replies that he is going to Kanpur but he will get down at Delhi. Uncle ji doesn’t like that one bit. He literally shouts at the man and says getting down in Delhi is all wrong and that he should actually get down at Jhansi. And my aisle starts laughing uncontrollably.

Dinner is served soon (it is Rajdhani Express afterall). I refused dinner since I had a very heavy snack. Uncle ji is mad again and I am lectured on how I should never skip dinner. Well if he had the means to look into my stomach contents, his advice would have been to skip meals altogether the following day as well. 

I wake up very early in the mornings whenever I am traveling. I love watching the sunrise through the fields from the train. As kids, Sandeep and I would also open the window to breathe the fresh morning air. This morning was very beautiful as well. The monsoon greenery was all over. The best colors known to the human kind – bright pink, deep orange, sharp blue, soothing green – were creating the golden hour. The fields had new crops growing and I could almost feel the softness of the new leaves. I tell you, it is magical!

The day goes by with breakfast and lunch served. Uncle ji has a heavy breakfast, burps heartily. He then scolds me for reading in the train and then starts reading the newspaper. And I smile, in spite of myself. People are listening to the music, watching a movie or just idling by before the lunch is served. And then everyone sleeps again after lunch. Once the tea is served, people get ready for casual conversations. An aged uncle is searching for his chappal (footwear). Another rule when you travel – People will take care of your luggage, but your chappal is your responsibility. His wife finds it for him 4 aisles down. God knows how it got there!

And as I start noticing the conversations around me, I am surprised how much people have to talk about even to complete strangers. Tax, VAT, Corruption, Manmohan Singh, BJP, movie stars – it is all covered. Soon they also start talking about the young generation and how the whole family dynamics have changed over the years. 

As I write this, we have just crossed Maharashtra and have entered Madhya Pradesh (MP). The train passes many hills and the art work of monsoons is evident everywhere. I stop writing and bask in the beauty thoroughly. I realize fully now that I am going to be home. The feeling of being home is the most relaxing feeling in the world!

Times have changed. I have upgraded from the sleeper to the Third AC. People are carrying all sorts of gadgets with them in train now. There are even charging docks everywhere. They use a freshner in the compartment. I see a suave gentleman reading through the Wall Street Journal on his iPad. I am even surprised to see one young man from Bhopal speaking flawless Tamil (he has a business there). Another man tells that he is originally from West Bengal but loves working in Bangalore. Times, indeed, have changed a lot but it still is all so familiar. Like I have been through this drill all my life. The more things have changed, they more they really have remained the same.

I have refused dinner today as well. There is a hearty meal awaiting me when I get home. In the meantime, there are still some interesting conversations on and I think I will pay attention to them, maybe even become a part of some.

This is me signing off from B4, Rajdhani Express, India! 

Reading or eReading?

“The habit of reading is the only enjoyment in which there is no alloy; it lasts when all other pleasures fade.”  - Anthony Trollope 

Like everything else evolving around us, books and reading in general has also evolved tremendously over the past few years. Even though dedicated e-book readers existed for a while, the biggest revolution in the field came when Amazon launched Kindle in 2007. It captured the imagination of a generation and it soon became the most popular Christmas gift. I received my Kindle as a Christmas gift. :)

The competition within the e-book readers market is very stiff. Of course, Kindle and Nook with their e-Ink displays remain the most popular readers by a distance. However, when Apple launched the iPad, even Amazon could not resist the temptation and launched Kindle Fire which can let you read books and do more. Whatever e-book reader you may have, though, the advantages are many. I can now carry about 3500 books in a single device which is about the size of a fiction book. No more wondering how to dispose the books which I do not want anymore. And I can now pick and chose what to read when I am travelling.  

But does our brain process a e-book the same way as a regular book? This is a very interesting question. Studies suggest that it takes a while for our brain to adjust to a new information medium because it disturbs the balance between the focal and peripheral attention. But apparently with repeated usage, our brain gets used to the idea. Naturally, our brains are tuned to information with a physical address or entity. Secondly, while we do have an advantage of having an instant dictionary and even web access for more information on our e-book readers but scrolling and typing on e-book readers could be more distracting than engaging.  

I personally mix and match. I can read realms of fiction on my e-book reader. But when it comes to “learning”, I much prefer to have a paperback. Maybe it has got to do with how my mind has been conditioned coming from a generation of textbooks and notebooks. But maybe this generation of kids who are exposed to digital media like never before, will have different preferences.  

All said and done though, there are very few things which give the thrill of the touch crisp pages and smell of fresh print.  

Two beautiful questions for the day - What are you reading next? What are you reading on next?