10 Minutes with: Jessa Marmol
Jessa, her husband Marvin, and 4-year-old Theo live in the Philippines and she fights daily to understand Theo’s medical complexities, take him to necessary appointments and do all she can to give him the best life possible wile Marvin works hard to support the family financially. Below, she talks about Theo’s journey with Cerebral Palsy and Epilepsy along with several other secondary conditions, what a day in their life is like and a few things that could make life a bit better for both of them as well as other children with similar conditions for whom Jessa also advocates.
MTEAM: Tell us a bit about yourself and your family.
JESSA MARMOL: I am Jessa C. Marmol, a stay-at-home and hands-on mom, married to Marvin Marmol who is a private employee. We are from the Philippines. I do a lot of research about Theo’s condition most of the time, which I truly enjoy. I am helping my husband sustain the cost of medication of our son by selling fundraising items and securing help from private and government agencies. I am not just a mom who wants the best for her own kid; I’m also an advocate for other babies with Cerebral Palsy and Epilepsy here in the Philippines. Together with my husband, our son Theo and volunteers from a private clinic, we conduct programs and activities that help families with children who have Cerebral Palsy and Epilepsy learn more about their respective conditions and how to properly treat them, for free.
MTEAM: Your son Theo has several different diagnoses. Can you explain these to us in a way that we can understand? How do they impact his (and your own) daily life?
JM: Theo was a premature baby, born at 35 weeks on February 20, 2015. He stayed for 23 days in NICU. To date, he has a working diagnosis of Secondary Spastic Quadriplegic Cerebral Palsy / Focal Epilepsy with several secondary conditions: Reversible Obstructive Airway Disease (asthma), Laryngo-Tracheo-Malacia, Allergic Rhinitis, Cortical Blindness or CVi and Astigmatism.
These conditions happened because he suffered Hypoxia or lack of oxygen to the brain, Meconium Aspiration Syndrome and Sepsis since I had an emergency caesarian delivery as per my gynaecologist’s advice due to a hormonal imbalance resulting in Pre-eclampsia. From there, Theo had a congenital heart disease, had a pneumothorax which resulted to his right lung collapsing, seizure episodes, Intraventricular Hemorrhage grade 4, Subarachnoid Hemorrhage and Moderate Communicating Hydrocephalus (no shunt) that almost led to Theo’s loss of life. He was revived twice during his NICU days.
But God is good. He treated all of Theo’s conditions one at a time. This journey tested our faith and made us strong and brave like Theo when he was fighting for his life. We were challenged, but we’re also hopeful that if we trusted God every single day, everything would be alright.
MTEAM: Tell us more about Theo! (How old is he? What does he love most? What makes him happy? What makes him uniquely Theo??)
JM: Theo just turned 4-years-old this February 20. These past few months, he has loved and enjoyed our DIY aquatherapy, but we stopped it recently because of the cold season. He’s happy when I tell him that we are going to go out to visit his teachers or to the arcade when we do our main shopping. He also loves to watch a witty little girl on social media.
What makes him unique is that, despite his condition, he really is smart. He can communicate in his own way through his facial expressions and voice intonations and he keeps on moving if he needs something to do. Theo is a vegetarian too and consumes little milk.
MTEAM: What’s a typical day in Theo’s life like?
JM: Our days are full of DIY therapies inspired by social media. We also spend time on the usual mneals and activities. Theo is following a normal number of meals, eating three times a day. It is the ideal eating habit and it is also the easiest and a less tiring pattern for me. Before, we spent two hours on feeding time per meal, but now he can drink his smoothie diet and take his medicines in 10 minutes and spend just 30 minutes eating his puree. We only attend formal Bobath Therapy once a week because we cannot make the recommended 2-3x sessions due to financial constraints. However, that is not a reason to stop doing therapies; I make sure to ask his therapist and learn the basic approach to do the same at home.
MTEAM: You’re currently fundraising for something called Hyperbaric Oxygen Therapy. What is this and how will it benefit Theo? You’re also looking for sponsorship for a medical stroller. Tell us a bit about this too.
JM: Hyperbaric Oxygen Therapy is one of the newest treatments for Cerebral Palsy and it has been proven in other countries to really help the brain’s hypoxic disorder and epilepsy as well as improve the upper respiratory system. That means Theo’s brain will get enough oxygen. There’s a child with Cerebral Palsy I know here in the Philippines who is having this therapy. There’s been development after a series of HBOT sessions and her milestones are noticeable. That’s why I’d like to try it with Theo. As his parents, we want to give him a better life. (If you’d like to contribute to Jessa’s Simply Giving campaign, click the link above).
I am also looking for a sponsor for a lightweight medical stroller too because we seldom experience having a companion come along to our check-up routines and therapies and our visits to secure medical help from private and government offices, thus making it a little difficult when just the two of us go out. My husband has to be hardworking to sustain our primary needs and the costs of Theo’s medication, so he can’t always accompany us. I am using a sling now that is meant for babywearing to make our travel easier, but it is not bearable carrying him far anymore because of his heavy weight. He is big for his age. The medical stroller will also help Theo to have perfect posture when sitting, even when we are outside, make him comfortable whenever we are on an outreach program or when we are waiting for his medical appointments. Lastly, the stroller will simply make our travel easier.
MTEAM: What have been some of your biggest challenges and the best rewards along your journey as Theo’s mom so far?
JM: One of the typical challenges is that I have to keep myself strong and healthy. I am carrying him daily from feeding, bathing and other activities, so I can’t be sick and I have to be okay even if I’m not. Other than that, I have to always think about how I will make Theo’s life better. As a parent of a child with special needs, I have to keep in mind the word bravery. I have to be brave to hide my true feelings, hold my emotions to be focused and be strong during every situation in our journey and face all the challenges head on. I have to be an optimist at all times and instill in my mind that no matter how hard the situation is, I trust myself and Theo’s abilities because God is always on our side. I have to be a persistent parent. I have to be fearless in searching for answers, trying my best and learning all about his condition. I have to be an advocate for my own son to change the way how he is able to face his own challenges.
Seeing Theo’s progress everyday despite his multiple conditions and hearing people say that Theo seems like he does not have a severe condition fuels me to continue to do what I do. Also, I am able to inspire other warrior moms, encourage them and give them hope that even in the hardest part of this journey with our kids, there are ways to keep standing tall.
MTEAM: How have you been advocating for Theo so far?
JM: I’ve been like a researcher, scientist, doctor, nurse, nutritionist, therapist and a warrior mom from the day that Theo was born. I do a lot of research and read articles that are relevant to Theo’s condition. I write my personal blog about his Cerebral Palsy/Epilepsy and other health imbalances, proper nutrition and home therapies and developments. We joined the Celebrity Fashion Show organized by Miss Possibilities Foundation, Inc last December 2017 to spread social awareness for Theo and social awareness to the society that beauty knows no boundaries. We were also invited as guests on one of the local TV shows to spread Cerebral Palsy awareness. I am selling a statement social awareness shirt to fundraise, too.
I started blogging and using social media in May 2016 to share our challenging journey. I continue sharing my advocacy and work with the non-profit organization called Cerebral Palsy Family Awareness Support Group Ph. Inc (CEFASGPH). We organized 11 events within one year; one of our major events was the World Cerebral Palsy Day Philippines 2018.
We are planning to visit as many places as possible here in the Philippines to show that even if Theo isn’t capable of doing everything a “normal” kid does, he is able to inspire families and spread Cerebral Palsy/Epilepsy awareness with the help of a volunteer Bobath Therapist from the private therapy center, kindhearted sponsors and established organizations who serve as our major sponsors.
MTEAM: What key changes do you think would make this a more inclusive world for children with complex medical needs like Theo?
JM: It should start within the families of all children with special needs. Acceptance is the key, but accepting their condition is not the only thing that we should do. Learning intensely about our children’s conditions as a family will be a huge help with campaign awareness and outreach for all of the disoriented families in the special need family community. We (parents of children with special needs) are the ones who should take the initiative to share our journey with the larger community despite what the rest of society does -- the staring judgmental eyes and throwing of insensitive words. By doing that continually, I’m pretty sure that future amazing kids with special needs that they will encounter will never experience what the first special needs family experienced when they meet that person.
Second, the health institutions and medical practitioners here in the Philippines need to help us to learn as much as possible and conduct more research about conditions like Cerebral Palsy and Epilepsy. We should be passionate and be resourceful in treating our children with multiple conditions.
Third, our government should support, strengthen and develop firm programs for paediatrics to deal with neurological conditions. Support from this institution will help us to sustain their medication to improve their conditions to avoid extreme disability.
If this happens, I’m sure that the other world of special need kids like Theo will flip to a sustainable inclusiveness around the world. Family to community, community to society, and society to the world.
MTEAM: Share a memory of one of the times you’ve been especially proud of Theo.
JM: This picture below reminds me how strong he is. Theo had an oxygen support the first five months of his life like he had when he was in NICU. He was able to remove his ventilator on his own and wean off his oxygen when he was 5-months-old. And even though Theo has an oral gastric tube and nasal canula during these five months, I wasn’t able to let him suck on a pacifier for a long time. When he did, he would suck for about a second and when he realized that there was no milk coming out, he would spit it out and cry loudly. Such a smart little one.
MTEAM: What’s one thing you’d like the world to know about Theo?
JM: Theo is a smart, kind, cooperative, strong and brave boy. Smart because despite his complex condition, he’s still be able to communicate in his own way. He’s kind and cooperative because even if he is unwell, I don’t have a problem feeding him. He won’t cry and will just have his meal by drinking and eating his smoothie and blended food. Theo is a mouth feeding boy despite his airway defect.
Theo is the strongest of the strongest and bravest of the bravest kids I know. He’s facing a lot of challenges along his journey, but he remains strong and brave like the way he has been since he was born.