A long overdue update…..
Our fund raising concert “Promise for Presli” in Honolulu on March 30 went pretty well. There were tons of glitches before and during that gave me more grey hairs, but I am over it now. Despite looking for someone to create a flier for several weeks, in desperation I finally made one myself. Clearly an amateur effort. I was saved in the end by Josh Hancock (AKA Josh86) of Unity Crayons – he is also the singer for Black Square in the photos – who made a truly impressive and attention-grabbing poster design. Glitch #1 – Josh and I went back and forth for several days getting things right. Then he sent the file to the printer on the day that the large poster duplicator was out of order. Good thing too, because I found a couple of other little things to adjust. So the next day, I went to pay for and pick up 675 fliers of various sizes, delivered the bulk of them to the coffee shop for Josh and went home with a stash my mom and I to disseminate. Later that evening, I did my neighbor a favor and picked his wife (Japanese national) up at the Safeway. We chatted on the way home and when we got to the lighted garage, I showed her one of the 11X17 posters. “Oh, Saturday” she said. My heart fell right into my feet. NOOOOOOOOOOOOOOOOOO FRIDAY FRIDAY FRIDAY!!!
Too late to do anything about it, I frantically texted Josh, whose voice mail box was full to alert him before sending his street team out with erroneous advertisements. His reply is not suitable for publication, but I’m sure you can figure it out. Here’s the funny part: Josh, mom, myself and the printer, all of us reasonably literate, did not catch it. But Junko, who has command of less than 5000 words of English saw the one error that could cause total disaster. If people showed up on Saturday, they would have missed the show! (Each person who distributed them had to manually fix that and one other remaining minor error before delivering their stacks to the businesses all over O’ahu). Note to self – check the details!
Glitch #2 – Then there was the whole fiasco of my internet not working all day, literally, until 10 minutes before I HAAAADDD to leave the house. However, by then, I was too late to go to the airport to pick up some raffle prize donations (or even take a shower), so I sent mom who had picked up the food donation with my friend Winter and she ended up being 10 minutes late for our own show. I got a call from both Josh and the bar wondering where we were and that they were not letting the first band in to play since nobody “official” was there. Hello….is it not still a bar and a show? ARRRGGGHHH!!! Note to self – drive faster?
I was there about 10 minutes after mom and by then she had things pretty well under control. The first band was going, the food was set up for the performers and the table out front was up and running. Glitch #3 – I heard the girl at the door ask someone how long they are staying to figure out how much to charge. Appearantly, as we were on our way there, the bar decided to change the age from 18+ after 9 PM to 21+, and some of the bands had advertised that there was a difference in the donation based on entry time, not based on age, which I had thought was pretty clear. Note to self – be more explicit!
The rest of the night was not so bad, even after mom left at about 9:30. There was a girl who had graduated from the school where my son attends, and where mom teaches. Somehow she had heard about the show and decided that since it was on her 18th birthday, she wanted to celebrate this special day doing volunteer work. Where did she come from and are there more like her!?!?! Stephanie was awesome and spent basically the whole evening sitting outside answering questions. We had never met her before. What a blessing she was! She stayed until mom left and the girl at the door and a friend took over all door duties. Come to find out later, the cash girl did not work at the bar, as I had assumed. She was with one of the bands!! I REALLY need to find out who she is so she can get proper kudos!
I Emcee’d as far as introducing the bands and thanking all the proper people every three bands or so, the kids did the door prizes and raffle and mom and a few others handled the door, guest book, info, etc. outside. Glitch #4 – Just when all seemed to be going smoothly, I discovered that I could not find a whole pile of donated gift certificates for the remaining band members. For about an hour and a half I ran around looking for those blasted envelopes, jumped up on stage between sets for announcements and intros, coordinated the raffle timing and content, checked on the video recording tape, that (thankfully) my friend Francie had graciously been handling, and changed the tapes when necessary, had a drink or two. I finally found the certificates, rubber-banded on the outside of the opened lid of a box, for safe keeping you know. Eventually, at about 11:30 finally made myself a plate of taquitos, beans, rice and chips (Gracias, Jaime!). My first food ALL DAY! Note to self – tell someone else where you store important stuff. DUH!
At about 9:30 my son had said to me that the party sucked and that he was bored and wanted to leave. I reminded him that for a teenager, 9:30 is the height of the night, but for adults, such as myself, we don’t even really start to show up till 10 or even 11. Hang tight, They will come. As expected, at about 11 the bar filled up a bit. There were close to 50 people inside when we shut down the cash box at about 12:30.
At just before 2 AM the bouncer told me that we had to start to wrap up. He told the last band, Black Square, that it was time. Josh said “One last song,” which the band cleverly turned into a prolonged song that was actually two or three different songs strung together. Isn’t ska grand? Bless him! He bought me and my crew some time to get things together and gather all the bands who were still in the house for a big group pic onstage, in front of the Peruvian flag hanging on the wall (donated by Percy Lau, a Peruvian who has lived in Hawaii for decades). At about 2:15 the bar staff was practically throwing us out, and we still had to pack up the car and the food and the people and …… PHEW! What a night. It’s no surprise that I spent most of the next two days sleeping!
So all told we took in just under $600, including our raffle ticket sales, with $72 being donated in a “calabash” box. In Hawaii this is traditional at weddings, baby luau’s, etc. for people to give money “just because”. This was awesome. We are now in the black and ready to move forward.
We still have some details to wrap up, including mailing thank you cards, updating the website, posting photos, etc. I also need to collect pix/vid from that night from other people so we can send them to a guy who will put together a video montage for us (Yeah, Nathan!). How cool is that!?! I would love to post it online and have Ely take Presli down to the gabinete by her dad’s house and let him see the concert and the people who came out to support him. That would be really great for his self-esteem. Especially if he can take a friend or two with him to see it.
So, that’s how I spent my Spring break in Hawaii! Oh yeah, I still have some hearing deficit in my right ear because, in my haste, I forgot to grab my earplugs and our “station” was just in front of the house speakers. Note to self – Keep earplugs in the car.
Now to the news, I have attached to this letter an original letter by Merardo Pillpa Alvarado and my translation. He receives tutoring, and now wound care, by Ely several times a week. Hopefully, by now his blisters are more under control and the family can be trained to maintain his care. Although his problem is DNA-related and incurable, we are doing whatever we can to treat the symptoms of his disorder, minimize his pain, increase his nutrition and reduce the disruption to his family. We have already sent money to Ely to buy him sandals that fit (he was wearing shoes that were too small!!), and medical supplies for his blisters, as well as vitamins and other items on a list we put together for her. He needs a new bicycle and other things, but we are very concerned about his family’s living situation. They live in an adobe home with no flooring. They also have no bedding whatsoever, so this boy with open wounds and no insulating fat tissue (i.e. skin and bones) sleeps on the dirt floor with his 5 siblings and their parents. When it rains, they put down plastic so they are not sleeping in puddles (of course they have a leaky roof). As if this weren’t bad enough, the landlord wants them to move out, probably because the place is condemned and is ready to be demolished.
Merardo is going to see the surgical team in La Oroya with Ely and Presli in August. Perhaps they will separate his webbed fingers at that time and he can learn to write normally and be more self-sufficient with his own feeding and wound care. It will be a great boost for his self-esteem and very likely a relief for the family as well. He really admires Nilton (Ely’s husband) and wants to be a professional. A professional what he has not specified, but it makes me smile anyway.
Ely said in a recent letter that there is a doctor nearby who is familliar with his disorder and said that the care instructions I gave her and the medical supplies we are providing are right on track. He has also provided her with other info that she will hopefully be able to put to use in his case. Sadly, Merardo’s condition comes with a very bad prognosis. A large percentage of patients with this particular type of EB (I don’t know the figure, mom found the data) develop a fatal carcinoma between the ages of 15 and 35. It is unavoidable and not at all like the kind you get from UV exposure. So keeping him out of the sun and slathering SPF 5000 will do him no good. It is a totally random and fierce cancer that he will not be likely to overcome. I have asked Ely NOT to share this detail with him or his family. There is no sense in causing them sadness and anxiety about something that they cannot prevent, will not be able to cure and may not even happen at all. I only tell you this so that you all can understand how completely serious this disease is. For more information, do an internet search for ‘autosomal recessive epidermolysis bullosa’.
To read his story in his own words (and my translation from Spanish), click here.
So, “Project Presli” surges on with funds now in the coffers instead of being in the red. Merardo’s daily agony has been minimized and his shoes fit. Contacts were made and bonds formed at the benefit concert. Offers of help in the future were received and people have been informed of the needs of the Andean people. We registered with the Hawaii Department of Commerce and Consumer Affairs as a charity (not a tax thing, just a business recognition). All in all March 2007 has been a pretty good month for PD.
Now, off to the website editor I go……
Lisa & Sherrill Sturm