help for jack

I pause from my (lately infrequent) postings about urban issues to ask for your help for Jack Simbulan. Jack is the five year-old son one of my dear friends and former colleagues in the Ayala Group. He was recently diagnosed with Fanconi Anemia and will require a bone marrow transplant to get a fighting chance against the disease.

Babette and Juni, Jack's parents, have sent out appeals for assistance (medical or financial). The operation alone will cost USD 200,000 not to mention the travel costs of bringing Jack to a competent hospital/center of expertise.

I am reproducing Babette and Juni's letter below that details what Jack has gone through and is going through and includes their contact details. Please get in touch with them if you can help or know of someone or some group that can extend assistance. If you have your own blog, could you please publish this plea -or link to this post- so we can reach more people for Jack? Thank you.

Letter from Babette and Juni Simbulan:

October 18, 2006

We are Babette & Juni Simbulan, residents of the Philippines. We are writing to you in the hopes that you can help us in any way get immediate medical help for our child.

Our first born and only child Joaquin (Jack) A. Simbulan was born on June 11, 2001 with multiple congenital anomalies. He was a pre-term baby (36/40 weeks), delivered via Caesarean section with low birth weight (1.72 kg). He had a PDA ligation when he was eight months old. He also underwent physical/ occupational therapy for two years to improve gross and fine motor movement. He was given a neurodevelopmental evaluation when he was 3.5 years old and was advised regular schooling. He is now 5 years old and attends kindergarten school when his health allows it. Despite his hand deformity, he can make full use of his hands and plays the piano!

In May 2005, he presented with thrombocytopenia and was seen by a hematologist-oncologist Dr. Maria Beatriz Gepte of the Philippine Children's Medical Center. A Bone Marrow Aspiration (BMA) was performed on him but he tested negative for leukemia. A second BMA was performed on him on September 28, 2006 and blood samples are now being tested to confirm Fanconi Anemia (FA). We should have the result within the month.

Since February 2006, Jack has had five hospitalizations due to low platelet and hemoglobin counts. In these hospitalizations, he has received transfusions. We just got back from the hospital where he got a transfusion, October 13-14, and received irradiated platelets and packed RBC since his platelet count has dropped to 23,000. Normal platelet count is from 150,000 up.

Fanconi Anemia, is a rare genetic disease that leads to bone marrow failure (aplastic anemia). It is a recessive disorder: if both parents carry a defect in the same FA gene, each of their children has a 25% chance of inheriting the defective gene from both parents. When this happens, the child will have FA. FA occurs equally in males and females. It is found in all ethnic groups. Though considered primarily a blood disease, it may affect all systems of the body. Many patients eventually develop acute myelogenous leukemia (AML). Patients who live into adulthood are extremely likely to develop head and neck, gynecological, and/or gastrointestinal cancer and at a much earlier age.

Unfortunately for us, FA is also hardly known or understood in the Philippines. We are listed in the international family registry of the FA Research Fund (www.fanconi.org; info_at_fanconi.org) and are in touch with some families in Canada, Australia and the US to better understand this dreadful disease.

Jack has recently been diagnosed with first stage bone marrow failure because of FA. In the meantime, Dr.Gepte plans to give a steroid to stimulate platelet/ hemoglobin production. We were informed that the medium term option is for a Bone Marrow Transplant (BMT). Unfortunately, Jack is an only child, with no potential bone marrow donor from a sibling. Due to the rarity of FA and the fact that very few doctors have experience in treating it in the Philippines, we were also advised that the BMT procedure be done abroad for higher chances of success.

We would like to seek medical treatment abroad and would like Jack to have a fighting chance. However, we are a family of modest means. Over the past five years, we have spent a good part of our savings for Jack's hospitalization and medical care through some insurance which unfortunately is applicable only to Philippine hospitals. We could raise the money for airfare and other preliminary expenses but we are uncertain as to how our family can afford the cost of a BMT. We have initially corresponded with the Cincinnati Children's Hospital which has extensive experience in FA cases. (www.cincinnatichildrens.org/fa) The cost is a staggering 200,000 USD.

It is in this light that we are appealing our son's case. We would like to seek any form of assistance (financial, medical) so that Jack can have a normal childhood and God willing, reach adulthood. The whole extended family is united in looking for organizations or charitable institutions to help our cause. We have faith in the goodness of people.

Thank you very much.


Very truly yours,

Babette A. Simbulan/ Juni S. Simbulan
#54 P. Eleazar St. MBLA Subd
Malanday, Marikina 1805
PHILIPPINES
babette.simbulan_at_manilawater.com
ana_simbulan2003_at_yahoo.com
junisimbulan_at_yahoo.com
Cellphone: 63-917-8574427
Home: 632-9425699


RITA S. SIMBULAN
548 S. Normandie Ave. #1
Los Angeles, CA 90020
Office - (213) 747-5588 Ext. 233 - 9 a.m. to 5:30 p.m., Pacific Time
Cellphone (213) 447-3587
Email: emerald5172_at_yahoo.com or ritasi_at_1stnetusa.com
Office email: rita_at_veniceinvestments.com

lessons to learn: mumbai considers the future of dharavi

I've often said that Metro Manila's problems are not unique. Other megacities around the world face the same challenges. We would do well to learn from their strategies - and see what works.

Here are two articles showcasing the debate between two approaches to dealing with urban slums. The task: improving the life of the 1M people who live in slums of Dharavi in Mumbai:

1. raze and rebuild
2. work with the people

Raze and rebuild:

Slums separate Bombay from its future
San Francisco Chronicle
Sudhin Thanawala, Chronicle Foreign Service
Thursday, October 12, 2006

A $2.1 billion dollar plan that "which would raze neighborhood homes and shops. In its place would rise a new town complete with modern apartment buildings, parks, schools, markets, clinics, industrial parks, and even a cricket museum and an arts center."

"With so many people living in slums, we can't take baby steps anymore. Unless we take dramatic leaps, we will not be able to make a difference," said Bombay architect Mukesh Mehta.

Mehta, a former New York real estate developer, has created a seven-year plan to turn Bombay's Dharavi neighborhood -- Asia's largest slum -- into a middle-class area that some experts say could become a model for slum redevelopment in other Indian cities. This former fishing village of about 600,000 residents is a bustling maze of ramshackle homes of corrugated iron and cement, tiny shops and open sewers prone to flooding during the monsoon season...

"What is unique about this plan is its attempt to provide new, on-site housing for such a large number of families," said Vinit Mukhija, assistant professor of urban planning at UCLA...

But critics call the plan simplistic and suspect its real aim is to appropriate land that has become extremely valuable given the slum's proximity to Bombay's domestic and international airports and a new, emerging business district...

Social activists also cite the lack of involvement of slum dwellers in the project.

"Development will be successful if you have a bottom-up approach," said Arputham Jockin, head of the National Slum Dwellers Federation, a community organization that has helped Dharavi's residents build apartments in the past. "But in this project, everything is imposed from the top."

Work with the people.

Finding a better future for Dharavi
Diana Squires for Monash University

While many groups are calling for India's Dharavi slums to be knocked down to make way for new housing, Monash Asia Institute director Professor Marika Vicziany is looking at alternative ways to help the residents.

Monash Asia Institute director Professor Marika Vicziany believes that although the area is chaotic and in need of an overhaul, the solution is not as simple as destroying buildings.

"What we are looking at is if you have one dollar to spend on the area, what would you do with it? Would you put it towards providing a crèche, new buildings or amenities for waste management?" she says.

"We need to be able to provide a list of priorities to the government as well as organisations in the area, which will identify what needs to be done first, based on what residents need most."

Professor Vicziany says her initial reaction to Dharavi was that the buildings should be knocked down to make way for new housing.

But despite the appearance of the slums, she says, the area is full of hard-working people who are extremely house-proud.

"The living conditions look terrible - they are terrible, but when you go inside the homes, they are spotless," she says.

"These people are not hopeless - they are the most energetic people in the city. The women make and sell textiles and food such as papadums. They are not people picking through rubbish - they are a population crammed into a small area, surrounded by filth because there are no private amenities and no roads providing vehicle access to the area."

Image credit: Aerial of Dharavi by Binu Alex from the 4th World Social Forum, World Council of Churches.

look ma, no more clouds!

Google Earth just updated! Even higher res and much more recent aerials of our favorite megacity. And you can see all of the Ayala CBD now!

Look at how crisp Greenbelt 3 looks. (Click on thumbnail for bigger image.)

(Yes, yes. I owe you chapter 6 of design of democracy!)

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