Note: Click on each thumbnail to see a full size photo.
Having talked extensively about our travels, I want to talk about our achievements beyond just our oversight and letter delivery duties.
For the past couple of years I have made the opportune and warm friendship of Rob Rose, a photographer in Bellevue, WA. Rob has a program (www.trfic.com) that works with all kinds of “specially abled” children in Nepal. He has networked with all kinds of people and organizations in Nepal in addition to cross-linking with local Rotarians all over Nepal. Mary Jane and I first linked up with Som back in 1997 when we were all working for HRDC, the Hospital and Rehabilitation Center for disabled children. Of course, MJ had a leg up on all of us with her 25 years of special ed teaching to begin with. Over the years we have helped educate a number of HRDC children.
Well, it was back in those days at HRDC where Som first encounter Rakesh who must have been about 10 years old. Rakesh has O.I., or osteogenesis imperfecti, a genetic disease in which bone is not properly laid down and is weak. Some variants have brittle bones which break easily; some have bones that do not ossify and are pliable. The latter seems to mimic Ricketts (vitamin D or sunlight deficiency) and predominates in Nepal, and we even have such a case Ram that we had picked up and referred to HRDC for surgical correction. Ram is the brother of a little girl Shova who gave us fits because she kept skipping school, but who is now in the 9th grade and 5th in her class. Her sponsor Harry in Seattle has bent over backwards to keep Shova off the streets….and as soon as he learned that the surgery was a success and that Ram could stand up and walk for the very first time (he was 4 or 5).
Rakesh has the brittle bone variety for which there is no surgical correction beyond repairing the multiple fractures these children sustain. Like Rakesh these children are of short stature as a result. Rakesh has 3 sisters. One who is married and out, one who is a few years younger, and one who had his condition and died around the age of 22-23—Rakesh’s current age. Som figures that unless something is done, the same fate awaits him before too long. Rakesh is lke Rapunzel, locked away in a tower with no escape. He has a few callers, Som and I, who climb three sets of stairs that are harder than climbing up braids of hair to reach Rakesh in order to visit occasionally and deliver some magazines. Rakesh when he was younger, smaller, would be carried down the stairs and placed in a wheel chair and go to school which Paula Doyle, our President, along with a group of friends sponsored. This lasted about two years and he has been able to develop his own reading skills on his own along with survival skills like knitting. I remember when a big sack of mittens, scarves and hats arrived in the mail for us to sell. I went ballistic over having to now become a hawker, too, but Paula stepped up to the plate and was able to sell them all. All this to say that Rakesh never complains, always wears a smile, is so glad to see anyone, and has some real talent and initiative. However, his father is older, his older sister gone, and those stairs are deadly if you tried to carry him or the wheel chair down the stairs.
Well, remember Rob? Last year Rob, as is his wont, came to Nepal to ride elephants with a host of specially abled children, along with doing a hundred other things. I had told Rob about Rakesh and asked Som to invite him to meet Rakesh….I don’t know if Rob was as horrified at his situation or was simply enchanted with Rakesh’s warm personality, but Rob mobilized his forces, Rotarians, govt and hospital agencies, NGOs. By the time I arrived in Nepal, a complete evaluation had been done, including a recommendation—Rakesh should be relocated to a bedroom apartment at Jorpati’s Home for the Disabled in Katmandu (about a half hour drive from Rakesh’s tenement apartment in Bhaktapur). It would cost a $100 a month to be located there, but would include medical access and coverage. But as importantly, he would be a hired as a handicraft teacher at the facility, and paid a small allowance!
As soon as we returned from the two weeks of travels in the bush, we visited Rakesh, Jorpatti, and some of those managing his case. Rakesh was excited about the possibility, so the Social Workers arranged for him to visit and see the place for himself. I have no idea how they brought him down the stairs…they are steep, dark, and only about 5 feet of clearance to the flight coming down overhead. At any rate, they did it and we met him, his married sister, and the social worker at Jorpatti…he was grinning from ear to ear! It was a done deal, we thought.
That evening Som got a call from the family saying they wouldn’t sign on. Too bad for them, I thought, until Som explained to me that the legal rights of the disabled in Nepal are owned by the family…they had to sign their consent on the dotted line, not Rakesh! I couldn’t believe it. The disappointment we all felt, not just for all the work we put in, but for Rakesh….now, he would be destined to die like his sister. At this point, with my Western mentality, I had two quick fixes: bribe or Gurkha knife their consent! Som, in his Nepali frame of mind, was accepting: Ke garne (it can’t be helped. Live with it!).
About a week later, we heard back from Rakesh. He must have either convinced his father and sister, or made them feel so guilty that they gave in and consented to a one month trial. We jumped on it before anyone could change their mind, and the next day had him seeded into his new quarters. Som initially felt that this trial would be a bust because Bhaktapur Newars (the ethnic group to which Rakesh family belong) are so conservative that they have a hard time adjusting to anything that’s not traditional.
Throughout the first week, Som was getting daily phone calls from Rakesh reporting how great he found this new home to be, and the new friends he is making, etc, etc…Finally, Som got a call from him saying that he wanted to enroll in a school over there! At 25, and entering the 5th grade, he would be their oldest student, but they were open to it! Talk about take charge…Rakesh didn’t ask anyone; he just sought it our and decided he wanted to do it. All the Social workers were emailing each other about Rakesh, so I have to share this one with you:
Latest and great news that Rakes dialed me yesterday night at 10 and he wants to go disabled school in Jorpati and I just dialed Mr. Rudra to manage everything for his school. So things are going well. I don’t know when this boy is going to stop dialing me at night and my busy time…….!!!!!!!!!!!!!!!!!!! Som
To be followed by this email from the head of NAD Home at Jorpati:
Dear Som sir,
I was also desperately hunting you after Rudra could not reach you about Rakesh’s enrollment in NDA school.
I am glad you confirmed to Mr. Rudra. Else I had requested Mr. Rudra to please consider till tomorrow until I obtain consent from Rob and Earle.
I am glad to share the feeling of 14 years NDA career of Mr. Rudra, who has not come across any person as happy as Rakesh in NDA premises.
He feels very good to be part of this achievement.
Well, it is not everyday you read about fairytales coming true. But, Rapunzel did make it out of his tower and found his new home-charming, and hopefully will live happily ever after. I don’t know how long Rakesh will live, but there is no question in my mind that his quality of life has made a phenomenal leap skyward, and this alone should carry him a long ways. And should something dire happen, the hospital is just down the hall, not down three death-ladened staircases and across town! What also brings joy to my heart is that I am sure that the other residents there are also benefitting from Rakesh’s outgoing personality. A diamond has no sparkle unless it is brought out for all to see.
Rob must believe in fairy tales, too, because he offered to pay $600, or half of the annual cost of Rakesh’s apartment, if ANSWER could come up with the other half. I initially told our board that paying for the home of a disabled person was not part of our mission, but what did they think?…They agreed with several dissensions. So, I personally covered the initial trial month just to see if the darn thing would fly.
But now, if Rakesh is going to school, this changes everything. (Honest, I didn’t even know there was a school! This was divine intervention –God having his laugh!) ANSWER’s mission is to support students, especially potential leaders. You read the assessment of Mr. Rudra that he has never met anyone in his 14 year career as happy as Rakesh is in his new home and that even Mr . Rudra is ecstatic, is a sure sign that others too are thrilled. He is a pigeon let out of the coop and is spreading his wings—socializing, teaching handicrafts, and returning to school, at last.
Finally, if any of you out there would like to help sponsor Rakesh, please email Lisa (firstname.lastname@example.org) or me (email@example.com). Yes, you will be writing to him and getting a letter back from our new student, his photo, report card and a drawing, too. Deadline for your letter is August 1, so please let us know right away. Dhanyabaad (thanks).