Description: Aired (December 28, 2024): Matapos mabisita ng Reporter’s Notebook ang batang hindi nakakalakad dahil sa malubha niyang kapanasanan, kumusta na kaya siya ngayon? Panoorin sa #ReportersNotebook.
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00:00In Oton, Iloilo, there is also a rare disease, the Noysiam Sedansel.
00:08Sometimes, the child is not able to step on the ground.
00:11And a wheelchair serves as his foot.
00:16Sedansel was diagnosed with Brittle Bone Disease,
00:20a rare disease that causes the rapid formation of bones in the body.
00:26One in every 20,000 people has this disease.
00:30I was surprised.
00:32In my first child, there was no such thing.
00:34And in our family, there was no such thing.
00:36He was the only one who had this disease.
00:38It's painful that he can't walk.
00:41He can't do what he wants.
00:43He can't play.
00:47When Sedansel is stuck in his wheelchair,
00:49he will be transferred to a rubber mat.
00:52His mother, Flordeliza, ties him with a belt so that he won't fall down.
00:57We tie him with a rope so that he won't fall down.
01:03For his safety.
01:05Flordeliza's daily routine is to take care of Sedansel.
01:09But he didn't lose hope that one day, his child will be able to walk.
01:14There is an operation that the doctor in the hospital is taking care of,
01:18but it costs more than P100,000 to do it.
01:25His wife's income is not enough to work as a security guard.
01:32For now, Sedansel is taking vitamins to get stronger.
01:35But even this is painful in the pocket.
01:39Sometimes, we can't afford it.
01:42When the doctor is taking care of him,
01:44he will be operated on so that his bones will be strong.
01:50His implant will be stainless.
01:53When he is admitted, we will know how much our expenses are for other expenses.
02:01While in Papag, Sedansel studies his modules so that he won't be late for class.
02:06Sedansel was in Grade 3.
02:08But one day, he wants to go back to school and be with his classmates.
02:13I'm so sad.
02:17What can I say? Please help me.
02:21In the Philippines, 156 are considered rare diseases.
02:27In 6,500, Filipinos have these symptoms.
02:31In 2017, a law called Republic Act 10747 or Rare Disease Act of the Philippines
02:37aims to help and care for Filipinos with rare diseases.
02:42But it is said that the help that can be obtained here is limited.
02:46The goal of the Rare Disease Act is to identify rare conditions
02:52to put up organized registry.
02:55So that if they are registered there, patients with these conditions
03:00can access better healthcare.
03:02They should also be given proper medical care.
03:07Just this December, PhilHealth announced that they will expand the coverage
03:11or coverage of benefits for rare diseases.
03:14But they haven't released the details yet.
03:17What diseases are included and what are the measures
03:21to avail it to those with rare diseases.
03:25More than two years have passed.
03:28We learned that the left temple of Sedansel has already been operated.
03:32It is now covered with stainless steel.
03:34And it has already recovered.
03:37When we last heard the story of Sedansel,
03:40there were people who asked for help.
03:43Someone also helped us.
03:45His situation is the same as my son.
03:48He was the one who helped us.
03:51Has he recovered from the surgery?
03:54His last surgery was in March.
03:57It was his second surgery.
04:00Sedansel will have another surgery on his left temple.
04:03But the stainless steel that was placed on his left temple came out.
04:06When is the next surgery?
04:08We don't have a schedule yet.
04:13Sedansel underwent surgery this March
04:15after receiving help from those who watched his story.
04:19How much help did you receive?
04:24It was up to his first surgery.
04:28Do you still have health problems?
04:32Yes, we still have health problems.
04:35My husband is the only one who works.
04:40I still help him.
04:46In the middle of our conversation,
04:48a familiar face appeared.
04:51Hi, Danzel!
04:55How are you?
04:58I'm fine.
05:00What do you want to say?
05:02Hello.
05:03Do you want to go back to school?
05:05Do you want to be able to do face-to-face again?
05:08What do you miss when you're at school?
05:11My classmates.
05:14What do you want to say to your mom and dad?
05:19I love them.
05:21What did you learn before we met again?
05:25Don't ask for help.
05:29Before the end of the year,
05:31Reporters Notebook gave a few small gifts to Danzel.
05:34We sent vitamins and milk for the child.
05:38Thank you so much, Reporters Notebook,
05:41for the milk and vitamins that helped me.
05:47God bless you all.