Duchenne Muscular Dystrophy (DMD) is a genetic disorder characterized by the degeneration of the body’s muscles, particularly the hips and thighs. This can lead to difficulty walking, maintaining balance, and even raising the arms. In the Philippines, most of the victims of DMD are young children to young adults, based on the fragility caused by the inherited disorder.
The life expectancy of individuals diagnosed with DMD revolves around the manifestation of delayed motor movements, which could result in the need for a wheelchair. DMD has been reported as having no cure, but treatment is available to help prolong the life of a diagnosed patient.
Two little warriors from the family of Juni have experienced a DMD diagnosis at a very young age, with one of them becoming an instant star after fighting DMD for 17 years. Prayer and faith have been Juni’s way of healing through battles over time.
Duchenne Muscular Dystrophy begins with the inherited condition of a patient affected by it, which causes the skeletal muscles to weaken, with symptoms usually appearing by the age of six. According to the Cleveland Clinic, despite DMD having no cure, treatments can be accessed to improve the quality of life.
Some of the symptoms present in a child or person diagnosed with DMD are as follows: progressive muscle weakness and atrophy (atrophy refers to the degeneration of tissues in the body or an organ), calf muscle hypertrophy (hypertrophy refers to the enlargement of muscles or organs), fatigue, toe walking, difficulty climbing stairs, frequent falls, developmental delay, breathing problems, learning differences, delayed speech and language development, scoliosis, and short stature (height).
UNCONDITIONAL LOVE
The family of Juni consists of six members, namely, Alexander Amora Juni, the head of the family; Janice Rose Juni, the wife of Alexander; Axl Jan Rose, the eldest son who passed away with a DMD diagnosis; Aneza Rose Juni, the second among the four siblings; Andre Aquilis Rose Juni, the third among the four siblings; and Angel Anthony Rose Juni, the youngest among the siblings who is diagnosed with DMD.
After five months since Axl passed away, Angel was diagnosed with Duchenne Muscular Dystrophy, leaving the family of Juni to accept the path and battles that have been given to them. The Juni family was originally from the province of Cebu, and in 2009, they moved to Sucat, Parañaque, soon after Angel was born.
Alexander Juni always reminds his family to pray to God after what they have been through. Huwag makalimot sa Diyos (Don’t forget God,) he stated.
It has been the Juni family’s tradition ever since Axl left that they would serve at church every Sunday, which refers to their family bond or family time. On weekdays, Aneza and Andre dorm out in Manila, away from home, but to keep their family tied with faith, they set up a video call every 8 PM to pray with them. Away from family yet bonded through faith in God.
Alexander Juni, the head of the family, works as a freelance photographer in liturgical works. At the same time, his wife Janice left the corporate world to take care of their children, most especially Angel. Despite experiencing a hard life, their family also receives donations from generous donors coming from different communities, congregations, and other missionaries. Alexander also mentioned that he volunteers for World Mission magazine.
Meanwhile, Alexander and Janice’s children study at the University of Sto. Tomas, with Aneza studying Biochemistry. Andre is currently in Grade 12–STEM (Science, Technology, Engineering, and Mathematics), and Angel is in a hybrid setup (home-schooled and face-to-face mode) at the same school.
As DMD strikes a second time, targeting two children in the family, they have been open in communities and also to their own families. With trust and faith in God, they have nothing to lose as they are united under the hope of surviving their everyday battles.
“Everything has a purpose. The Lord has a purpose, maybe to encourage other families or to inspire their families. The Lord is here with us. God is here with us, helping us along,” Alexander shared in an interview.
HOPE AS STRENGTH
Aneza and Andre shared how hope seemed to strengthen their relationship as siblings. Every weekend, aside from praying, they spend the day spending time and playing with each other, from watching their favorite show on television to playing games together and helping one another.
There is no excuse in this family. As for Aneza and Andre, they will serve as Angel’s own shoulder to stand on and fight his battles in life. Angel’s sister, Aneza, shared her dream of entering medical school and becoming a doctor in the future. This dream is to help Angel and possibly discover the cure for Angel’s disorder.
“I want to help them. Maybe sa course ko, makahanap pala ako ng gamot sa muscular disease. Wala man para kay kuya, maybe sa other people, kay Angel,” (I want to help them. Maybe on my course, I could find a cure for muscular disease. If it did not happen to kuya–referring to Axl, maybe to other people, maybe to Angel), Aneza stated.
While the medical path may help Angel recover someday, Andre also shared his dream for himself and his family. “Mag-pilot, para sa future I will be able to travel with my family in different places. Lalo na si Angel na nasa bahay lang palagi. Hindi siya nakakalakad,” (To become a pilot, so in the future I will be able to travel with my family to different places. Most especially Angel, who is usually at home since he cannot walk), he shared.
One thing that Alexander described Angel as their prayer warrior. He believes that if others cannot hear you, you still have God and Mama Mary above, waiting for your message. As for Angel, there have been no days when he did not pray and thank God for giving him life to survive every day.
As he got his dream prayed over, he shared that he wanted to be a police officer someday to help victims and the abused. Despite his young age, Angel optimistically sees life as another chance to fight for himself and his family each day.
One may fail, but the other may continue his life on. For Juni’s family, the struggle of having two family members suffer from the same diagnosis brings so much heartbreak over the years. Still, one thing that embraces this family’s faith is His promise: “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.”
As Alexander says, Walang salitang pagod pagdating sa pamilya, (There is no such word as ‘tired’ when it comes to your family).
TRUST IN GOD
Even if it’s difficult to find peace and comfort in a tragic way, the Juni family leaps their faith by clinging to the memory of their beloved Axl and praying for Angel’s recovery. With a lot of challenges coming their way, no one will get tired of believing and resting in the arms of their family with the guidance of God.
God has been Juni’s source of strength and a track to heal from being weak over time, delving into a great position to trust and have faith in Him. As Alexander always mentions, when he has nowhere to turn to, he would always return to God and Mama Mary, as he knows He has His way of listening to everyone who asks for His help.
He may not be present physically, but the thought of Him being up there, guiding all of the people who believe and do not believe in Him, gives a prudent hope to anyone who has been blinded by vulnerability and defenselessness.
Believing in Him makes the Juni family even stronger, day by day. Laging magpray and huwag mawalan ng loob sa Diyos, (Always pray and don’t forget God), Alexander stated.
A family’s love and faith towards God cannot be replaced by money or any trading term as this serves as they have seen your ups and downs, strengths and weaknesses, laughs and cries, and even your ‘what ifs’ and ‘I hope’.
To Angel, you may not find the cure for your DMD right now, but your family will serve as your kind of treatment to help you heal and believe in the miracle that someday, your life could be saved. “If Lord cannot give Axl the miracle, maybe in hopes of Angel, he’ll provide,” Janice mentioned.
To the family who trusts with hope, the family who has faith, and the family who rests in God, let the blessings find your way and let your hope provide a miracle someday. “To my children, what I can say is keep going. Move on. In everything that we are experiencing, the Lord uses us to be an instrument to inspire other families. Everything has its purpose. Your mother and I are here for you,” from Alexander’s open letter to his family.
