- 12/29/2024
Aired (December 28, 2024): Ilang kuwento ng pag-asa, sakripisyo, at tagumpay ang muli nating balikan.
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00:00Four years ago, we met a man who had an extraordinary feeling.
00:07He couldn't stop the music and movement of his body.
00:12He couldn't stand up and move alone.
00:16This is the condition of Marlon from Mamurao, Occidental, Mindoro.
00:34His father, Anna Marie, has been taking care of Marlon since he was seven years old.
00:41Why are you doing all of this for your father?
00:46I love my father.
00:50If my father wasn't here, we wouldn't be here.
00:58The sad thing is, even though Adonis is his younger brother,
01:06he is already experiencing symptoms like Marlon's.
01:11But despite the unstoppable movement of some parts of his body,
01:21Adonis is still being treated as a tricycle driver.
01:27I feel like I can't ride it anymore.
01:32I can't even notice it.
01:35In Oton, Iloilo,
01:37Danzel, who is 11 years old, is also suffering from the same condition.
01:43Because she can't walk, she sits on a rubber mat and wheelchair all day.
01:50It hurts that she can't walk.
01:53She can't do what she wants.
01:56She can't play or run.
01:58It's okay because I can't leave this place.
02:02In a country where it is hard to get sick,
02:04it is considered a rare disease that is not easy to find a cure.
02:13After a few years, how is Marlon's condition?
02:19Adonis and Danzel.
02:24In 2020, I first met the Roga family from Manila.
02:30It was a 12-hour trip to their hometown in Mamburau, Occidental, Mindoro.
02:38Because it was just the beginning of the day of the family
02:41when we were able to meet Ana Marie,
02:43who was being fed by her father, Marlon Roga.
02:47He is the one who serves as the foot of the family.
02:50From feeding,
02:56to bathing.
02:58When did you start taking this responsibility from your father?
03:04I was 5 years old.
03:06How old are you now?
03:08I'm 11 years old.
03:09It's been a long time.
03:12How do you make him strong?
03:14I tell him that he is fighting.
03:20Why are you doing all of this for your father?
03:25I love my father.
03:31I love you.
03:32I love you too.
03:33I love you.
03:34I love you.
03:35I love you.
03:36I love you.
03:37I love you.
03:38I love you.
03:39I love you.
03:42Because without my father, we wouldn't be here.
03:53In 2010, Marlon felt his weakness in his 20s.
03:58After 5 years, he lost his ability to speak properly and to walk.
04:05Marlon,
04:08your situation is difficult,
04:10but we are thankful that you have a son like him.
04:14Yes.
04:18What do you tell him when you are alone?
04:22I tell him,
04:24I don't have anything.
04:26I only have my life.
04:29I don't have anything.
04:32After filing a case against his father,
04:35Anna Marie prepared to go to school.
04:41Her father sent her to the store where her mother, Anna Lynn, works.
05:02It's time for Anna Marie to go to class.
05:08What do you want to see on your graduation day?
05:13I hope that my father will help me when I graduate from grade 6.
05:17What is your dream for yourself?
05:20I want to be an engineer so that I can help my family.
05:25At this time, Anna Lynn still doesn't know about her husband's illness.
05:30Anna Lynn also has a problem on how to take care of her husband.
05:34They still need to cross the sea and travel for 7 hours
05:39to bring Marlon to the hospital where there is a specialist.
05:42But the family can't afford it.
05:46It was in 2011 when they finally brought Marlon to the hospital.
05:51If I don't look for a job, they won't have anything to eat.
05:55It's a sacrifice for their father.
05:58As long as I'm strong, I can do it.
06:03But we found out that even though Marlon and Adonis are siblings,
06:07they are starting to experience the same symptoms.
06:12But despite the sound of their fingers and hands,
06:15Adonis is fighting his feelings and continues to help his family.
06:21I thought that I might get sick,
06:25but when I was 28 years old, I told myself that I didn't feel anything.
06:31Were they also sick when they were 28 years old?
06:35Yes, they were both 28 years old.
06:37In 2018, I felt something in my body.
06:39It was like my feet were weak.
06:41I was just 30 years old.
06:43I felt it.
06:44It was like my feet were weak.
06:46I couldn't kick too much.
06:48I didn't notice it.
06:49I was still moving around.
06:51In 2018, I felt something in my feet.
06:53It was like my feet were weak.
06:55I couldn't kick too much.
06:56I didn't notice it.
06:57It was like my feet were weak.
06:58I didn't notice it.
06:59I couldn't kick too much.
07:00How old are you?
07:01I'm 33 years old.
07:03It's only been a few months.
07:05It's been a few months.
07:06I can't speak.
07:08To understand the feelings of the siblings,
07:11the reporter's notebook contacted the local government of Mamburao.
07:21To help the local government of Mamburao,
07:23the siblings Marlon and Adonis will cross the island
07:26to be examined by specialists.
07:28I hope you get well soon.
07:30To help the local government of Mamburao,
07:33the siblings Marlon and Adonis will cross the island
07:36to be examined by specialists.
07:53Marlon and Adonis were taken to the Batangas Medical Center
07:57if there's a specialist who can examine them.
08:03But according to the doctor,
08:04they need to undergo genetic testing
08:07to confirm their illness.
08:11So from Batangas,
08:13we brought the brothers to a private hospital in Quezon City.
08:17What we see right now is they have dystonia,
08:27twisting of extremities because of the contraction of the muscles,
08:32extremities of the arms, of the legs.
08:35Marlon has inversion of the legs already
08:40and both of them have retrocollis
08:43or the backward twisting of the neck.
08:48Based on the initial examination,
08:50they have a not far-reaching X-linked dystonia, parkinsonism,
08:53according to Marlon and Adonis.
08:56It's a rare progressive movement disorder
08:59that until now has not been seen clearly.
09:0330 to 50 out of every 100,000 people
09:08have this kind of illness in the world.
09:09After 4 years, we asked the brothers how they are doing.
09:20This is Marlon's condition.
09:23He can move on his own, somehow.
09:27Marlon can also speak.
09:29How are you?
09:30I'm fine.
09:33How's your speech?
09:36Is it okay?
09:37I don't know how to speak, but I'm learning.
09:41I'm learning how to speak.
09:42You can walk, somehow.
09:45I can walk, but I can't sit.
09:51I can't sit on a bench.
09:54You can only walk?
09:57Yes, that's all.
10:01But do you feel that you've changed a lot?
10:04Yes, a lot.
10:07We first met Marlon when he was very far away from us.
10:16You're going to show your muscles now, huh?
10:19His son, Annemarie, is now in Grade 12
10:23and will finish high school next year.
10:26Because of his father's gradual improvement,
10:30he is now more focused on his studies.
10:33How's your life?
10:36It's okay.
10:37You're smiling now.
10:41Does that mean that your situation is getting better,
10:47especially your father?
10:49Yes, my father is now fat.
10:52I'm happy that my father is gradually changing his body,
10:58especially his physique.
11:00It also helps me to focus on my studies.
11:05The good news is that Annemarie is now an honor student.
11:09How are your grades?
11:11I'm with honors.
11:12Wow, that's great.
11:16What are your plans after this?
11:18I really want to be an engineer,
11:20but I have second choices, I want to be a police officer.
11:25Annemarie will continue to tell how she was able to help them
11:29through their stories on television.
11:36A foundation is also helping to distribute the medicines that Marlon needs.
11:43When the program was aired on television,
11:47many people gave us help,
11:50they gave us money for my studies,
11:54for our food, and for my family.
11:56Thank you very much.
11:58Be strong, Marlon.
12:01Have you noticed any other help that came to your father
12:06since his story was aired?
12:09A lot.
12:11We were able to build a nice house.
12:17And in January 2021,
12:19another dream of the couple came true.
12:22Marlon and Annaline got married.
12:25We're getting married.
12:27Are you getting married?
12:29Yes.
12:30Did your decision to get married help you?
12:34Did you notice that you're getting better and stronger?
12:38Yes.
12:41But what if Marlon's condition got better?
12:46Let's go back to the news of Adonis' wife, Janice.
12:52Before, Adonis was able to work as a tricycle driver.
12:58Now, she can't walk on her own.
13:01It's as if Adonis' condition is getting worse.
13:04What happened?
13:06We don't know what happened.
13:09But as time goes by,
13:11he's getting thinner.
13:13He can't walk properly.
13:17It could be because the phases of XDP
13:21were just going through one by one.
13:24When I say phases,
13:26typically, XDP manifests around the 30s to 40s.
13:30The 30th to 40th decade of life.
13:33I think that could be the reason
13:35why the situation was like that.
13:38Now, the later-manifested sibling
13:42is the one who's getting worse.
13:44You're the one who's now standing
13:47as a father because of your wife's condition.
13:52How difficult is that situation?
13:55I'm sorry.
13:56I really feel the difficulty
13:59because I have children who are studying.
14:03My income is not enough
14:06to cover all of that.
14:08That's the difficulty I'm experiencing.
14:11But I'm trying.
14:15Janice now hopes that her husband's condition will get better.
14:18Just like what happened to her brother, Marlon.
14:21I told my husband to be positive.
14:25If he gets through this,
14:28he won't be able to take care of me.
14:31To keep Marlon and Adonis healthy,
14:35we met again with the local government of Manggurao.
14:40We saw the development of his brother.
14:44If he can do it, you can do it too.
14:48How are you?
14:49The siblings were immediately visited and examined by health workers.
14:53We brought food for you.
14:57They also gave some food packages for the family.
15:04They also assure that they will monitor Marlon and Adonis.
15:09The reporter's notebook also provided a little help
15:12for the treatment of the siblings.
15:14This will help them not to be sick.
15:18They will be able to massage and their necks won't be itchy
15:21because they don't move.
15:23Thank you very much for covering for us.
15:29This has been a big help,
15:32especially for Marlon's family.
15:37In Oton, Iloilo,
15:38there was also a car accident.
15:41In Oton, Iloilo,
15:42there was also a car accident.
15:46Sometimes, the child was not able to step on the ground
15:50and his feet were stuck in a wheelchair.
15:55Danzel was diagnosed with Brittle Bone Disease.
15:59It's a rare disease
16:01that causes rapid bone damage to the body.
16:04One in every 20,000 people has this disease.
16:09I was surprised.
16:10In my first child, there was no such thing.
16:13In my family, there was no such thing.
16:15He was the only one who had this disease.
16:17It's painful that he can't walk.
16:19He can't do what he wants to do.
16:22He can't play.
16:25When Danzel is stuck in his wheelchair,
16:28he will be transferred to a wheelchair.
16:30His mother, Flordeliza,
16:32tied him up with a belt
16:34so that he won't fall off the wheelchair.
16:36We tied him up with a belt
16:38so that he won't fall off the wheelchair.
16:41It's for his safety.
16:43Flordeliza's daily routine
16:45is to take care of Danzel.
16:47But she didn't lose hope
16:49that one day,
16:50her son will also be able to walk.
16:52The doctor in the hospital
16:54is giving them an operation
16:56but they need more than P100,000
16:59to do it.
17:03Her husband's income
17:05is being used as a security guard.
17:10For now,
17:11Danzel is being given vitamins
17:13so that he will be able to walk.
17:14But even this
17:15is painful for his bones.
17:18Sometimes, we can't afford it.
17:20The doctor in the hospital
17:22is giving him an operation
17:25so that his bones will be able to jump
17:29to his implant.
17:31Stainless.
17:32Once he is admitted,
17:34we will know the expenses
17:36for other expenses.
17:39While in Papag,
17:40Danzel is studying his modules
17:42so that he won't be late for class.
17:44Danzel was in Grade 3.
17:46But one day,
17:47he wants to go back to school
17:49and be with his classmates.
17:51I'm so sad.
17:56What can I say?
17:57Please help me.
17:59In the Philippines,
18:00156 are considered rare diseases.
18:04In 6,500,
18:06Filipinos have these symptoms.
18:09In 2017,
18:10the Republic Act 10747
18:13or Rare Disease Act of the Philippines
18:15was passed.
18:16It can help and care
18:17for Filipinos
18:18who have rare diseases.
18:20But it is limited
18:21in terms of help.
18:24The goal of the Rare Disease Act
18:27is to identify rare conditions
18:29to put up organized registry
18:32so that if they are registered,
18:35patients with these conditions
18:38access better healthcare.
18:40They should also be given
18:41proper medical care.
18:44In December,
18:45PhilHealth announced
18:46that they will expand
18:47the coverage
18:48or coverage of benefits
18:50for rare diseases.
18:51But they haven't released
18:53the details
18:54of what diseases are included
18:56and what measures
18:58to be taken
18:59for those with rare diseases.
19:03More than two years have passed.
19:06We learned that
19:07Danzel's left eye
19:08was operated on.
19:09He was given
19:10stainless steel
19:11and his eye was removed
19:13somehow.
19:14When we last heard
19:16the story of Danzel,
19:18there were people
19:19who asked for help.
19:21Someone helped us.
19:22His situation was the same
19:24as my son.
19:25That's what helped us.
19:27We tried to recover.
19:29Did he recover
19:30from the surgery?
19:32His last surgery
19:33was in March.
19:34It was his second surgery.
19:35Yes, it was his second surgery.
19:38Danzel's other eye
19:39was also operated on.
19:40But the stainless steel
19:42he was given
19:43came out.
19:44When is the next surgery?
19:45We don't have a schedule yet.
19:52Danzel was operated on
19:53this March
19:54after the help
19:55came from
19:56those who watched
19:57his story.
19:59How did you receive
20:00the help
20:01that you received?
20:04It was in his first surgery
20:05that he was operated on.
20:08Did he have any other problems
20:09after the surgery?
20:10Did he need to go to the doctor?
20:12He had a lot of problems.
20:14Of course, we were
20:15very busy.
20:17My husband
20:18was the only one
20:19who worked.
20:20Now, I'm the only one.
20:22I tried to help him
20:23as much as I could.
20:26In the middle of our conversation
20:27with Flordeliza,
20:28a familiar face
20:29appeared.
20:31Hello.
20:32Hi, Danzel!
20:36How are you?
20:37You can tell us.
20:38How are you?
20:39I'm fine.
20:40What do you want to say?
20:42Hello.
20:43Do you want to go back to school?
20:45Do you want to go
20:46face-to-face?
20:47Yes.
20:48What do you miss
20:49when you're alone
20:50at school?
20:52My classmates.
20:55You're with your mom.
20:56What do you want to say
20:57to your mom and dad?
20:59I love them.
21:01What did you learn
21:02before we met
21:03for the last time?
21:06Don't help.
21:09Before the end of the year,
21:10a few gifts
21:11were given by
21:12Reporters Notebook
21:13to Danzel.
21:14We sent him
21:15vitamins
21:16and milk
21:17for the child.
21:18Thank you so much,
21:19Reporters Notebook,
21:21for the milk
21:23and vitamins
21:24that will help me.
21:26God bless you all.
21:36Marlon,
21:37Adonis,
21:38and Danzel
21:39are among those
21:40who have severe illness in the country.
21:42No matter how bad
21:43their feelings are now,
21:44any good change
21:46gives them hope
21:48to continue
21:49fighting.
21:50Until next Saturday,
21:52I'm Mackie Pulido.
21:53I'm Yun Veneration.
21:55And this is
21:56Reporters Notebook.
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