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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 starting to experience symptoms like Marlon's.
01:11But despite the unstoppable movement of some parts of his body,
01:21Adonis is still a tricycle driver.
01:26I feel like I can't ride a tricycle anymore.
01:31I can't even look at the road.
01:35In Oton, Iloilo.
01:37Danzel, who is 11 years old, is also suffering from the same symptoms.
01:43Because she can't walk, she sits on a rubber mat and wheelchair all day long.
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's hard to get sick,
02:04it is considered a rare disease that is hard to find a cure.
02:13A few years have passed,
02:16how is Marlon, Adonis, and Danzel?
02:29In 2020, I first met the Roga family.
02:33From Manila, they traveled for 12 hours to their hometown,
02:37in Mamburau, Occidental Mindoro.
02:41Because it was just the beginning of the family's day
02:44when we were able to meet Ana Marie,
02:47who is being fed by her father, Marlon Roga.
02:50He is the one who serves his father's feet and hands.
02:54From feeding,
03:01to bathing.
03:03When did you start taking responsibility for your father?
03:09Five years old.
03:12How old are you now?
03:14Eleven.
03:15It's been a long time.
03:22How do you make him stronger?
03:25I tell him that he's fighting.
03:31Why are you doing all this for your father?
03:35Because I love my father.
03:40Because without my father, we wouldn't be here.
03:52In 2010, Marlon felt a sense of weakness in his teeth.
03:57Five years later,
03:59he lost his ability to speak properly and to walk.
04:04Marlon,
04:06you're in a difficult situation,
04:09but we're thankful that you have a son like that.
04:13Yes.
04:17What do you tell him when you're alone?
04:21I tell him,
04:23I love my father.
04:25I love my father.
04:28I love my father.
04:34After filing a case against his father,
04:37Anna Marie got ready to go to school.
04:43Her father sent her to the store where her mother, Anna Lynn, works.
04:50Nice to meet you.
05:02It's time for Anna Marie to go to class.
05:08What do you want to see on your graduation day?
05:13I want my father to look up to me when I graduate from grade 6.
05:17What is your dream for yourself?
05:20I want to be an engineer so 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's a specialist.
05:42But the family can't afford it.
05:46In 2011, they finally brought Marlon to the hospital.
05:51If I don't look for a job, they can't afford it.
05:55It's a sacrifice for their father.
05:58As long as I'm strong, I can do it.
06:02But we found out that even though Marlon and Adonis are siblings,
06:07they started experiencing the same symptoms.
06:12But despite the sound of a hammer and nails,
06:15Adonis is fighting the symptoms and continues to help his family.
06:21I thought that I might get the same illness.
06:25But when I was 28, I told myself that I didn't feel anything.
06:31Were they also 28 when they got the same illness?
06:35Yes, they were both 28.
06:36In 2018, I felt something in my body.
06:39I felt like my legs were getting weak.
06:41I was lucky.
06:42I felt like my legs were getting weak.
06:45I couldn't move my legs.
06:47I didn't notice it.
06:48I kept moving my legs.
06:50I felt something in my knee.
06:54When I moved it, it hurt.
06:57I felt something there.
07:00How old are you?
07:01I'm 33 years old.
07:03It's been a few months.
07:05I can't speak.
07:08To know how the siblings are feeling,
07:10the reporter's notebook was connected to the local government of Mamburau.
07:30With the help of the local government of Mamburau,
07:33the siblings of Marlon and Adonis will cross the island to be examined by specialists.
07:53Marlon and Adonis were brought to Batangas Medical Center
07:56to be examined by a specialist.
08:01But according to the doctor,
08:03they need to undergo genetic testing
08:06to confirm their illness.
08:10So from Batangas,
08:11we brought the siblings to a private hospital in Quezon City.
08:22What we see right now is they have dystonia,
08:26twisting of extremities.
08:29Extremities 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 feel not far from X-linked dystonia, Parkinsonism.
08:56Marlon and Adonis,
08:57a rare progressive movement disorder
09:00that until now,
09:01no one has seen a cure.
09:0430 to 50 out of every 100,000 people
09:08have this disease in the world.
09:15After 4 years,
09:16we again examined the siblings of Roga.
09:20This is Marlon's condition.
09:23He can move on his own,
09:25no matter what.
09:27Marlon can also talk.
09:29How are you?
09:30I'm okay.
09:33How is your speech?
09:35Is it okay?
09:37I'm okay.
09:39I can still talk.
09:42You can walk,
09:43no matter what?
09:45I can still walk.
09:48I can still walk.
09:50I can still walk.
09:51I can walk.
09:52I can walk.
09:53I can walk.
09:54You can walk?
09:55Yes.
09:56I can walk.
09:57I can walk.
09:58But do you feel that the change is big?
10:04Yes, it's big.
10:06We first met him far away.
10:11Wow,
10:13you're showing off your muscles now.
10:16His son is Annamarie.
10:18He's in Grade 12 now,
10:20and he will finish high school next year.
10:23Because of the gradual improvement of his father's condition,
10:27he is able to focus more on his studies.
10:30How is your life?
10:33It's okay.
10:35You're smiling now.
10:37Does that mean that your situation is getting better,
10:42especially your father?
10:45Yes, my father is getting fatter.
10:47I'm happy that my father is getting better,
10:51that his body is slowly changing,
10:53especially his physical condition.
10:55It helps me to focus more on my studies.
11:01Good news,
11:02Annamarie is now an honor student.
11:04How are your grades?
11:06I'm with honors.
11:08Wow, that's great.
11:12What are your plans for the future?
11:14I really want to be an engineer,
11:16but I have second choices,
11:18I want to be a police officer.
11:21Annamarie will continue to tell us how she was able to help them.
11:25From telling their stories in the television,
11:28to helping with a foundation
11:31to provide the medicines that Marlon needs.
11:35When the program was aired on TV,
11:39many people helped us.
11:42Someone gave us food for my family.
11:48Thank you very much, Annamarie.
11:50Thank you very much.
11:52Someone gave us food for my family.
11:57Thank you very much.
12:01Did you notice any other help
12:03that came to your father from his stories?
12:09We were able to build a nice house.
12:16And in January 2021,
12:19another dream of the couple came true.
12:22Marlon and Annaline got married.
12:25We're getting married.
12:27You're 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 if Marlon's condition is good,
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 alone.
13:01It seems like Adonis' condition is getting worse.
13:04What happened?
13:06We don't know what happened.
13:09After a few years,
13:11Adonis became thinner.
13:13He couldn't stand properly.
13:17It could be because the phases of the XDP
13:21were just going through one by one.
13:24When I say phases,
13:26typically, the XDP manifests around the 30th to 40th decade of life.
13:33I think that could be the reason
13:35why the situation of Adonis was like that.
13:39Now, the later manifestation of Adonis
13:42is more severe.
13:44You're also a father now
13:48because of your wife's condition.
13:52How difficult is that situation?
13:56I'm sorry.
13:57I feel that it's really difficult
14:00because I have children who are studying.
14:04My income is not enough
14:07to cover all of that.
14:10That's the hardship that I'm experiencing.
14:12But I can do it.
14:16Now, Janice hopes that her husband's condition will get better
14:20just like what happened to her brother, Marlon.
14:22That's why I told my husband to be positive.
14:27If his condition gets worse,
14:30he won't be able to take care of me.
14:33To monitor the health of Marlon and Adonis,
14:38we went to the local government of Manggurao.
14:42We saw the development of his brother.
14:46If he can do it, you can do it too.
14:52The brothers were immediately visited and examined by health workers.
14:56We brought you food and relief goods.
15:01They also gave some food packages for the family.
15:07They also assured that they will monitor Marlon and Adonis.
15:12The Reporters' Notebook also provided a little help
15:15for the treatment of the brothers.
15:17This will help them so that their muscles won't be cramped
15:22and their necks won't be cramped because they won't move.
15:27Thank you so much for covering for us.
15:32This has been a huge help, especially for Marlon's family.