My name is Paola, and I am Julieta’s mother.
Julieta was a deeply wanted and loved child. She was a little girl we dreamed of, prayed for, and waited for with so much love. From the very beginning, her story has been one of strength.
During my pregnancy with Julieta, I became seriously ill with pneumonia and ended up in the intensive care unit. It was a terrifying time for our family. But even before I could hold her in my arms, Julieta showed us how strong she was. She held on to life and kept fighting.
Julieta was born prematurely at 35 weeks. We thought that after surviving such a difficult pregnancy and birth, perhaps the hardest part was behind us. We were wrong.
When Julieta was only two months old, she suffered her first cardiorespiratory arrest. At three months old, she suffered another one. From the moment she was a baby, I knew in my heart that there was something special about my little girl.
As she grew, we faced one diagnosis after another. We received answers that were later proven to be wrong, and we kept searching for the truth. I refused to stop looking because I knew my daughter, and I knew there was something deeper that needed to be understood.
When Julieta was two years old, she had a seizure and suffered another cardiorespiratory arrest. This time, she required approximately an hour of resuscitation.
The doctors told us that Julieta was a miracle.
And to me, she truly is.
After everything she has survived, Julieta was finally diagnosed with BPAN, a rare genetic condition caused by a change in the WDR45 gene. Her condition has caused severe developmental challenges. She is nonverbal, unable to walk independently, and requires assistance with many aspects of her daily life.
At her most recent neurology appointment, we were also told that, because of the multiple cardiorespiratory arrests she has experienced, Julieta may have cerebral palsy in addition to BPAN. This is something her medical team continues to evaluate as we work to understand all of the challenges she faces.
But Julieta is so much more than her diagnoses.
She is my daughter. She is a little girl who smiles, who loves, who fights, and who continues to surprise us with her strength. She has faced things that no child should ever have to face, and yet she continues to move forward.
Since Julieta was a baby, I have done everything within my reach to give her the best life possible. I have paid for her medications, therapies, medical appointments, transportation, and many of the things she needs out of my own pocket. I have worked, sold whatever I could, and done everything I could to make sure she receives the care she deserves.
I have learned that when you have a child with complex disabilities, love is enormous, but love alone does not pay for therapies, medical care, specialized equipment, transportation, medications, and daily necessities.
And now Julieta is growing.
She no longer fits safely or comfortably in a regular stroller. She needs specialized equipment that can properly support her body and allow us to transport her safely. She needs mobility and positioning equipment, continued therapies, medical care, medications, supplies, and transportation to her many appointments.
I work hard and sell many different things to help provide for our family and for Julieta. I take her with me whenever I can, because she depends on me for so much. I have spent years finding ways to give her opportunities, comfort, dignity, and quality of life.
But I have reached a point where I can no longer do it all alone.
That is why I am asking for help.
Our goal is to raise $50,000,000 COP to help cover Julieta’s medical and therapeutic needs, specialized mobility and positioning equipment, medications and supplies, transportation, rehabilitation, and other essential expenses related to her care.
This fundraiser is not about giving Julieta a perfect life. It is about giving her the best life possible with the circumstances she has been given.
It is about helping her sit comfortably, move safely, attend her therapies, get to her medical appointments, receive the care she needs, and continue developing whatever abilities she can.
Every contribution, no matter how small, can make a real difference in Julieta’s life.
If you can donate, thank you from the bottom of my heart.
If you cannot donate, please share Julieta’s story. A share can reach someone who may be able to help. Sometimes one person sharing a story is all it takes for that story to reach the right person.
Julieta has already survived more than we ever imagined a little girl could survive.
She fought before she was even born.
She fought through pneumonia, premature birth, multiple cardiorespiratory arrests, seizures, hospitalizations, and years of uncertainty while we searched for answers.
And she is still here.
She is still fighting.
She is still my little girl who never gives up.
I have spent her entire life fighting alongside her. I will continue to do everything I can for her, but today I am asking others to stand beside us.
With all my heart, I want you to know that your support—whether through a donation, a prayer, or simply sharing her story—truly means the world to us. You are not just helping a cause; you are helping a little girl who has fought for her life since before she was born.
Julieta is my miracle. She is my reason to keep going every single day. And even on the hardest days, when exhaustion and fear try to take over, she reminds me with her presence that love is stronger than anything we face.
I don’t know what the future holds, but I do know that we will not walk it alone. With your help, Julieta can continue receiving the care she needs to live with more comfort, more dignity, and more possibilities.
From the bottom of my heart, thank you for reading her story, for feeling it with us, and for being part of her journey.
With endless gratitude,
Paola.
julieta’s’ mom
