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Victoria Devenecia: A pillar of strength

Juana Victoria Devenecia

Mothers share two common traits: the ability to love their children and the fortitude to soldier on because they would do anything for their children. Victoria carries such traits a hundredfold. With incredible strength, she journeys down her own path of motherhood. Her love for her family: an unflinching hope and support system for her daughter, Kate, and her devotion to her son, Jaden, are an inspiration for us all.

Mothers share two common traits: the ability to love their children and the fortitude to soldier on… Click To Tweet

 

  1. Tell us about yourself.

 

I grew up in San Francisco and moved back to Manila about 12 years ago. I have been married to Javey for 10 years and we have 2 kids. My son Jaden is 8 years old and my daughter Kate is 5 years old.

 

  1. How did you know your daughter had GM1?

 

When Kate was born, her development was completely normal. She was crawling, cruising, saying words and filling in the blanks when I would sing songs, the ABC’s, or count. She knew and could distinguish who was who in the family. However, at around 18 months of age, I found it strange that she still could not walk on her own. I just had a feeling – I guess “mother’s instinct” – that something wasn’t right. We had her checked by two pediatricians, both of whom said that she would eventually walk in her own time.

 

A few months later, we had her checked again as she still wasn’t walking on her own. This time her pediatrician considered it a red flag and told us to have her screened for developmental delays. We had her screened on October 2012 and it showed very, very slight delays in her gross motor skills, fine motor skills and speech.

 

Honestly, I was surprised there were any delays at all in her fine motor skills and speech. Although optional, I had her start therapy sessions right away (physical therapy, occupational therapy and speech therapy).

 

After a few months of frequent therapy sessions, I noticed not only was she not walking on her own yet, she stopped talking as well. None of her doctors could pinpoint the reason behind it so the only course of action we could take was to continue to research and hope therapy sessions would help.

 

Fast forward to June 2014, a year and a half since Kate started losing her motor skills, and during a summer trip to San Francisco, she had a major seizure attack, 6 in a span of two hours. We immediately brought her to the Emergency Room at UCSF. There she was admitted for almost 1 week to help control the seizures and run tests to find out what was causing them. They finally conducted an Exome Sequencing test, which was fairly new at that time, to determine what was wrong with Kate.

 

Sometime December 2014, we finally received her diagnosis – GM1 Gangliosidosis.

 

I remember that day just as well as the day I gave birth to her.

 

I remember Javey calling me into the room. Javey had received the email from UCLA. I remember him meeting me at the door of our room and I knew right away by the look on his face there was something wrong. I’ve never seen him that way.

 

I remember my heart racing when he said we got the results back from UCLA and I remember praying in my head to please make it good news. Then he said GM1 Gangliosidosis. It was very unfamiliar so I was still hopeful.

 

Until he said it was very rare, there was no cure, and it is terminal.

 

When you hear those words about your child, you kind of shut down. We were both devastated. Every time I think about it, it breaks my heart each time. I questioned myself a lot. What did I do for this to happen? It has taken awhile for it to really sink in. I kind of force my brain to forget things because it hurts too much.

 

As her parents, we also have to stop dreaming of all the what-could-have-beens. Could she have been a doctor? A teacher? How would she have looked going to prom or walking down the aisle? I think that was the most painful – realizing and accepting what Kate’s life should have been. Now our focus is more on having the best quality of life we can offer to her.

 

GM1 gangliosidosis is a rare, neurodegenerative disorder that progressively destroys nerve cells in the brain and spinal cord. According to studies, she will begin to lose her ability to see, hear, swallow, stand, talk, etc. Eventually her brain functions will fail and thus her organs as well. There is no cure or treatment that is proven that can help stop the deterioration.

 

Juana GM1

 

 

  1. How is Kate?

 

Last February 2016, we had to have a peg placed to help her feed because she was having difficulty eating. It would take us literally hours just to finish a meal and she was starting to choke when given liquids. To prevent pneumonia, which these kids are prone to, we decided to finally go through with the procedure. She has gained weight and is much healthier with it.

 

Her day typically starts at 6am where we would feed her through the peg and give her anti-epileptic medication. She has 3 anti-epileptic medications. In the mornings, we would have to give her one every hour. She also feeds every 4 hours during the day and her feeding ends at midnight every day. She usually wakes up around noon as her medications make her sleepy. We would then get her bathed and ready for therapy.

 

Most of her therapists come to the house now because we try to keep her away from crowded places to prevent her from catching anything. We noticed that she would have more seizures after traveling in the car going to and from her therapy clinics. Some days she has 2 kinds of therapy and usually only has Sundays completely free.

 

I try to take her out as much as possible. We usually go to Rockwell or places where there aren’t too many people. We walk around the village every late afternoon. There are not many places around the area that are friendly to special needs or disabled children that we could go to on a daily basis so we look forward to our summer vacations.

 

  1. What are the challenges you face as a mom?

 

I think caring for kids like Kate is challenging both physically and emotionally.  Physically because she needs constant care at least 18 hours a day, whether that is feeding her, going to therapies, doctor visits.

 

The biggest challenge is dealing with it emotionally, whether it is the fear of the unknown, watching your child go through seizures and pain, or seeing other children who are her age doing things that Kate can no longer do.

 

There are times when I feel I’m going a little looney. Sometimes I’d suddenly wake up screaming or crying. There is just so much fear and sadness in my heart. I feel guilty when I’m out and not with her. I feel like I’m wasting borrowed time. Instead of feeling excited or planning trips with friends, I dread it because I know I won’t be with her 24/7.

 

  1. How do you divide your attention between your kids?

 

As much as possible, I try to bring/pickup my son from school. Lately, I haven’t been able to bring him to school because of late nights. Sometimes Kate has a seizure in the middle of the night around 2am while asleep. It wakes her up. Sometimes she would sleep right away. Other times, she won’t sleep until morning. Kate sleeps in my arms so that I can feel her if ever she has a seizure at night.

 

I also try to volunteer when Jaden has field trips around the area. I have to stay nearby just in case of an emergency. I also make time to take Jaden to his sports practices and games. He doesn’t like it when he has to go with a yaya and says he prefers that Javey or I go with him. It’s really the only time that we have just the 2 of us.

 

He does tell me that he feels I spend more time with Kate, that he feels that I love her more which breaks my heart because I love them both the same. It’s just that Kate needs more attention. Sometimes, I have to remind myself that he really is just 8 years old and I shouldn’t expect too much from him and that he needs just as much attention.

 

 

Juana Victoria

 

 

  1. Amidst the challenges, what are the triumphs?

 

With Kate, every day is unique. It is filed with triumph, blessings, disappointments, and challenges.  People tend to forget that we are just normal parents. We have our off days as well. We just learn to cope and meet the unique challenges because we love our daughter so much.

 

We are just fortunate at times to meet so many amazing people, whether it is other parents with special needs, disabled or sick kids, or people who care and just want to help in any way because it gives us the encouragement to embrace the journey.

 

  1. How has everything changed your perspective about life?

 

Kate has changed my perspective about everything in life. The things people normally take for granted is what I pray for; to see her walk on her own, to tell us what she wants, to have friends by her side, to play, to learn, to become better.

 

With Kate’s condition, we are always surrounded by stories of hope but also stories of death. Whenever a child we know passes away, it literally breaks my heart. Every year that passes, every birthday, I get more scared. I wish it were always “happy” birthdays, but it hurts me more than anything.

 

I wish I didn’t have this pain in my heart. But, despite all of that, I don’t see Kate as anything but a blessing. I’ve also realized that not everyone is blessed to have an angel as a daughter.

 

We don’t get to do what typical moms and daughters get to do, but Kate and I were able to complete the pilgrimage during the jubilee year of mercy together. At the last church, there was a prayer that I read that really resonated with me: “…May all who suffer pain, illness or disease realize that they are chosen to be saints and know that they are joined to Christ in His suffering for the salvation of the world.” Kate is an angel and a saint and so, in a way, we have been given the greatest blessing from God.

 

  1. How are you working towards Kate’s treatment/care?

 

We initially started #awin4kate as a way to help raise awareness and inspire people to fight their battles, whatever they maybe, together with Kate.

 

But as Kate’s skills began to regress further, we slowly realized that families with these conditions are usually left to fend for themselves.  It is rare that any insurance company would want to help and care is extremely expensive.  So we began to fundraise, not only to help Kate cope with her disease but to help find a cure.

 

Today, we are now involved and aligned with the Curegm1 foundation, which was started in the Unites States by a family with a daughter in a similar situation.  The foundation has funded and continues to fund research for Gene Therapy, Stem Cell and other possible areas.

 

To date, NO child has won the battle against GM1 Gangliosidosis.  AWin4Kate through the CureGM1 Foundation will change that. We need your help, whether it is through donations, fundraising ideas, volunteers, organizers, social media experts, etc.  Together, we will find a cure for GM1 and other related diseases, and save the lives of children around the word.

 

 

ana@juana.com.ph

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