Batang may malubhang kapansanan, kumusta na ang kalagayan? | Reporter’s Notebook - video Dailymotion

GMA Public Affairs

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.

Batang may malubhang kapansanan, kumusta na ang kalagayan? | Reporter’s Notebook

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