The mission behind YMO, the inspiration to create this organization, and all the pain and suffering we went through all began with my daughter’s health journey. A journey we have learned so much from in the past and the journey we continue to fight with to this very day.

 

I gave birth to my daughter on May 17, 1994, in my hometown of Manila, Philippines. I was scared, anxious, excited, and having my first child by myself as my husband was deployed overseas at the time as he was serving in the United States Air Force. We were young first-time parents, having her at eighteen years old, still figuring out how to navigate life myself. She was tiny, being born at 6 pounds and 19 inches. But even then, in those first moments looking at her, I knew she was going to experience a life full of happiness, success, and adventure. I promised her at that very moment to try to give her everything that life had to offer and more. At least, that’s what every parent wishes for their child. I never imagined my child would have to go through what she did in years to come. 

 

They always tell parents to enjoy the early years because they grow up right before your eyes and boy were they right. As she grew up through the years, I enjoyed watching her become this stubborn, self-confident, and determined young lady. And these traits were consistently shown throughout her infant, toddler, and childhood years. She always impressed me with getting what she wanted because she would always figure out a way, just like her mama. She did well academically, was respectful and polite to all she crossed paths with, and the way she loved taking care of kids always made me proud. She was able to adapt to all the relocations our family was assigned to, was able to help whenever possible and was my right hand once her siblings entered our lives. 

 

Her goals and dreams were always big. She’s wanted to become a pediatrician ever since she was young. There’s this picture of her completing a “checkup” on her Elmo doll when she was four years old and ever since then she has been motivated to achieve that dream. It wasn’t until her first symptoms started to show up that halted that fantasy and had her face reality. 

 

She was like every other kid who only got sick once a year. So, you could only imagine how scared, surprised, and anxious we were as her parents when she experienced a seizure at 14 years old. This was confusing as she never had anything of this sort prior to. Here we are now in the emergency room completing spinal taps, blood work and many other tests to figure out why this had happened. I can remember her tears, her screaming, and the overwhelmingness of helplessness I felt as the doctors tended to her. Who knew that helplessness feeling would cling on for years to come. 

 

Since her seizure she only became much sicker. By the age of 16 she would have seen 5 different specialists that consisted of a Nephrologist, Hematologist, Gastroenterologist, Neurologist, and a Rheumatologist each with their own prescriptions, treatment plans and many appointments. Our family was stressed, confused as to why this was happening and trying our best to follow the medical advice being given. Joana eventually was taking so many medications for her small body that she ended up suffering from side effects that resulted in her being under 90 pounds, she couldn’t walk properly, experienced daily fainting spells, swollen joints, and high fevers whenever she got too cold.

 

We were living in Las Vegas, NV at the time and even though we would have triple digit weather, there she was with a jacket because her body could not sustain enough heat. This was all happening during her high school years where she should’ve been hanging out with friends and being a teenager and instead, she was completing millions and millions of medical tests spending her time in the hospital and doctor’s offices. 

 

After seeing so many specialists and trying different treatment plans, she was finally diagnosed with End Stage Renal Failure and Crohn’s disease at sixteen. She was promptly started on hemodialysis where she received three-hour treatments three times a week. It was rough at firstas she had to learn a new normal with a catheter in her chest but eventually began to show promise. She started to gain more energy, her blood labs results were improving, and her other symptoms were decreasing. We were gaining hope that this would help her feel better both physically and emotionally. And it did, until it didn’t. 

 

She suffered an infection in her catheter causing her to need a replacement that required another surgery. She would be on hemodialysis for three years from age 16 through 19. We had just moved to California where she began her college, and everything was going well until we received news that her kidney function was now at 5%. Now we were only faced with two options, to put a fistula in her arm or find a kidney for a transplant and fast. And after her being on the transplant list for three years and hoping for a deceased or living donor I knew it was time for me to help our baby girl. 

 

On August 28, 2013, I donated my kidney to Joana at Stanford Medical Center. It was so successful in helping her heal that on that day she came to visit me on the donor’s floor, something that hasn’t been done according to our nurses! I remember being so happy and being at such peace because she immediately had a big appetite, walked better and was not reporting any more pain. Our recovery didn’t take too long, and we were both so grateful that life was back to normal. It was a blissful moment for all of us that would last for 9 years. 9 years of her returning to achieving her dreams, finishing both her bachelor’s and master’s degrees and just experiencing life without anymore medical issues, or so we thought. 

 

Come March 2022 my donated kidney is fighting to hold on. She went to the emergency room for an entirely different reason and was informed that her kidney was failing. We were all devastated as we knew this meant another road of challenges for her. She was immediately in surgery for peritoneal dialysis as she required treatment fast if they were going to preserve the little function the kidney did have. She was on peritoneal dialysis for 8-9 hours every single day, still working full time as a Marriage and Family Therapist and a Professional Clinical Counselor at a job that had her commuting 1.5 hours back and forth. 

 

As much as she tried to hold her head high and continue to live life with her new normal it began to become too much for her. She only ended up more ill as the stress, commute, and treatment overwhelmed her body. She had fluid retention that would swell up her legs, make it hard for her to breathe and difficulty with her blood levels that would leave her depleted. Watching her get weaker and weaker requiring weekly hospitalizations, blood transfusions, and medication after medication was difficult to endure. Every single day, every month there are new symptoms that she suffers from, and the same feelings of helplessness are ever so present.

 

Now at 29 years old, she faces End Stage Renal Failure for a second time, Heart Failure from her heart overworking itself to fight the ESRD and is back on hemodialysis. She has completed open heart surgery and is recovering to the best of her ability. Every day we hope that she’ll get lucky enough to get a donated kidney soon but until then we will do all in our power to keep her comfortable and live the best life we can provide. 

 

When I ask her what she thinks about what she’s gone through she says: 

“This time is different. Yes, my illnesses are more severe but now I don’t carry that same shame and guilt I did the first time around with those diagnoses. Now I welcome the love and support from others in asking questions and wanting to know what life is like as a kidney and heart patient. And now I try to face every day as it is and have a positive outlook because I know that I still have an amazing life despite this small setback and that things could be much worse. I hold myself a lucky one with all things considered because I gained so much from this entire 9-year journey. It has helped me mature, be grateful for everything I have and solidified the reasonings behind why I am so keen to finish my goals. This time around I’m not scared and want to use this experience to bring awareness and help to those who may be in the same predicament.”

 

All of that positive attitude coming from such suffering is the reason why we continue to push forward. We continue to want to bring the best out in others because we know we have beenblessed with this journey. This is the reason why we created this organization because we believe that we can bring forth the community to help those suffering chronic illnesses. Whether it’stesting themselves to become organ donors, helping financially, spreading awareness of how to help, or educating those who may not know of these diseases. We are glad to do our part. 

Joana continues to fight to this day to stay as healthy as possible until she does receive her kidney transplant. She completes 9-12 hours of hemodialysis treatment weekly and still has many visits to the hospital. We continue to hold hope and faith for her healing and will continue to do what we can to bring awareness to the community. 

 

Thank you for spending a moment to read about my family’s journey and how we got here. 

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Remember, In the midst of challenges that seem insurmountable, we want you to know that you're not alone. Your strength, resilience, and courage in the face of medical illness are truly remarkable. While the journey may be tough, please remember that each step you take is a testament to your unwavering spirit.

 

In your moments of doubt, remember that you are surrounded by a community of individuals who care deeply about you. Your loved ones, healthcare providers, and support networks are here to uplift and inspire you. Your journey is unique, but you are never alone in it.

 

It's okay to have days when you feel overwhelmed – those feelings are valid. But even on the darkest days, there is a light within you that refuses to be extinguished. Hold onto that light, for it is a beacon of hope that guides you through the storm.

 

Know that your journey is a source of inspiration for those around you. Your perseverance reminds us of all of the strength of the human spirit. As you navigate this path, you may find moments of peace, joy, and connection that help alleviate the weight of your challenges.

 

Believe in the power of healing, believe in your own strength, and believe that better days are ahead. You are not defined by your illness; you are defined by the love, courage, and resilience that radiate from within you.

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