Lean Ubongen is a 13-year-old Filipino boy who has already survived two open heart surgeries. He was born with only two chambers in his heart, a single ventricle and a single atrium.
When he was around a year old, he was operated on for a Glenn shunt procedure at the Philippine Heart Center. Last year, he was required to undergo a Fontan procedure at the Philippine General Hospital.
He did quite well in his growing up years and has even managed to graduate recently from his alma mater The Raya School in Quezon City.
However, new complications have developed and according to Lean’s mother, PGH doctors have suggested that it would be too complicated to operate on him, for the third time, in the Philippines.
Recent complications
“After the cardiac catheterization, the doctors found that the Fontan conduit was totally clogged,” explains Emibel, Lean’s mother who currently works as a court attorney at the Supreme Court.
The family is not aware of any genetic connection to Lean’s heart disease. Emibel relates that she underwent five years of fertility drugs just trying to have a baby. It was only when she turned 36 years old that the couple was blessed with baby boy Lean. Lean is an only child.
“His condition is very unique because he is also dextrocardia (heart is pointed to the right side of the chest),” continues Lean’s father Warren, who is a disaster risk reduction and shelter specialist at United Nations’ Habitat Philippines.
Among the symptoms the family needs to deal with on a daily basis include problems with Lean’s circulatory system like edema and fatigue. Lean sleeps with oxygen as he is prone to shortness of breath. His diet is also restricted to low fat meals.
“According to the doctor, he is prone to sudden death syndrome. For the slightest reason, his heart could suddenly stop beating.” Emibel details that he needs to be well rested and to avoid physical exertion.
Crowdfunding
Emibel’s sister Dr. Eliza Raymundo who is a urologist in the United States has asked around for medical advice on Lean’s case and the family has been given hope that a heart transplant may be possible. However, it comes with a $1-million price tag.
A doctor in the United States also suggested trying crowdfunding as he had seen an instance when a patient from Panama managed to raise that amount for his transplant.
Crowdfunding is a recent trend in fundraising that involves getting support from a large number of donors such as Internet participants. It allows ordinary individuals to publicize their funding concerns and get a reaction from donors worldwide.
Last March 31, Lean’s Heart Fund through www.gofundme.com was established. As of May 7, the fund had already managed to raise $12,700 from 59 donors, still far from the goal but noteworthy just the same.
Other possibilities
“The response was really good during the first week. We were able to raise almost $10,000. To date, we have raised $15,000 including offline donations. That was very encouraging and heartwarming because I never knew people could be so generous. At least half of those who donated were not my personal friends,” says Emibel.
The family is also looking into other possibilities including holding their own garage sale and selling property. They are also exploring other charitable institutions.
“Sometimes it gets depressing because we have been turned down due to the complexity of the case and because they don’t fund heart transplants,” Emibel said.
The family is aware that the requirements for a transplant are quite enormous and possibly unattainable. They admit that perhaps spiritual help and a miracle are needed.
Lean’s disposition
“It’s not just about getting it (funding), it’s also following God’s will,” says Warren who used to work under the social development arm of Santa Maria della Strada Parish Church in Quezon City. According to Warren, he worked as an architect for a company before he got attracted to working with the local parish.
Emibel shares that her son also gives her endurance.
“I have to keep a brave front for my son so he will also keep fighting. More amazingly, it is Lean’s joyful disposition that gives me strength to go on each day.”
She continues, “Lean never complained about all the difficulties and pain he experienced. He never questioned God why he is in such a difficult situation. He even wants to be an altar boy.”
For the Ubongen family, time is of the essence as the doctors have suggested dire consequences if Lean fails to get a transplant. In the meantime, the family lives by faith and continues to pursue all avenues, including this new idea called crowdfunding.
For more details, contact Emibel Ubongen at 0917-8311423 or visit Lean’s Heart Fund on www.gofundme.com website.