Help Roxan Thrive Against All Odds

Hi,

My name is AJ, but more importantly, I am Roxan's Dad❤️

I'm the one organizing this fundraiser in order to build up the funds that are going to be necessary to provide her with all the treatments, surgeries, and medications she'll need throughout life, in order to live as long, and happily, as God, medicine, and your generosity make possible. Roxan is no longer a baby; she is now, against all odds, 16 years old! Let me tell you a little about Roxan and her journey so far through life:

The day Roxan was born:

We were on the way home from a baby shower for Roxan when her mother said: "I think I peed my pants!"... I, of course, rolled my eyes, "Again?" (As all of you mothers know, that happens... often). Then: "No, it's too much, my water broke."

How could this be? We still had a month to go! But, sure enough, Roxan was on her way!

Roxan was born with a lot of complications. At first sight, just what was physically noticeable, Roxan was head to toe different. Literally.

For starters, the entire left side of Roxan's body has deformities and abnormalities. She's deaf in her left ear. She's blind in her left eye (in which she also suffers from Microphthalmia).

The entire left side of Roxan's head and face are noticeably flatter and misshapen. To put it bluntly, it looked like someone poured acid on a plastic doll and let the features all drip and run out of place. This was the result of Roxan being born with Craniosynostosis. Roxan's skull and bones simply could not grow correctly. And, because of this, Roxan's brain has no room to grow inside of a cranial vault that simply couldn't expand. She's already undergone a couple of craniofacial reconstructions and will require them throughout her life.

Traveling down, it was noticeable that Roxan's left arm was misshapen, and she was missing half a finger! (Roxan, a self-proclaimed "big back" these days, likes to joke that she got hungry in utero and decided to nibble her finger a bit. Savage!)

Perhaps the weirdest thing about Roxan is that she was born... TWO-TONED! Yes, you read that right. Directly down the center of Roxan's body is a very clear line. To the right (her right), she is as white as the underside of her daddy's (That's Me!) forearm. To the left, the color reveals the beautiful skin tone of her Puerto Rican heritage passed down from her mother. I love it ❤️

As we continue our journey, we notice that Roxan's left hip doesn't sit right, and her left leg is noticeably shorter! And, at the bottom of that leg? The most beautifully deformed little foot I had ever seen! Roxan was both missing toes AND had an extra big toe!!!

All of this was overwhelming. Made even more so by the fact that we just had a "High Risk" Level 2 Ultrasound performed, just to be safe. They took all vitals, measured everything, counted fingers and toes, etc. The works! The findings:

"All clear, she's perfect!"

Well, SHE WAS PERFECT, but all wasn't clear as we found out. Later we would try to obtain the imaging and reports of that ultrasound, only to be told they didn't exist. Instead, we got a free line about how the appointment report stated that the parents refused the level 2! Are you serious?!? That's why we were there! Well, come to find out they had a newbie conduct the level 2 without proper supervision. She screwed up. A lot. She submitted her report and it wasn't reviewed. When they realized they fudged up, all of a sudden it never happened! Whatever, we weren't trying to sue, we were just trying to find answers. So much for "Do no harm."

I did consult an attorney AFTER they lied. The attorney was willing to take on the case, but only as a "wrongful life case." Slam dunk, they said. Well, let me explain that in a nutshell:

A wrongful life lawsuit is a legal action brought by a child against a healthcare provider for failing to prevent the child's birth due to medical negligence. The lawsuit alleges that the child's life is "wrongful" because they were born with severe disabilities or health problems that could have been avoided.

So, basically, had they done their jobs right, we would have known about all of Roxan's issues and had the ability to terminate the pregnancy instead of allowing her to be born like this.

Well, thanks, but no thanks! Slam dunk or not, I would not sit there and pretend that I would have opted for an abortion! She was my baby! Our FIRST CHILD! IDC if we knew she had 6 heads, we were having her, damn it! We would not have felt good at all about big money coming from us saying we would have chosen not to have her had we known. F that! So, we declined to sue.

Okay, that was just the physical that we could see:

The first day:

Roxan's doctor came in to us and told us point blank: "Hold her, she isn't going to make it long."

So we did.

He told us Roxan was born with a severe case of "Swiss Cheese Heart." Basically, Roxan's heart had holes all through it, and this was causing all kinds of problems. Her lungs were also filling with blood. She had reflux in her kidneys. Her O2 was super low at all times. Her brain waves weren't registering much at all. All of her systems were on the fritz, and she was going to die.

This was destroying Roxan's mom. She couldn't stop blaming herself, even though she did nothing wrong. My heart was bleeding for both of my girls at once. It was my job to protect them, damn it! But, I needed an enemy to fight for them. But this?!? I was powerless for the first time in my life. Helpless.

The second day:

Roxan is DESTROYING those tiny little newborn bottles. I mean crushing 2-3 at a time when most healthy kids barely chug one! My girl's not hearing a word of what they say! She's a fighter!

The doctor comes in and says: "Don't leave her side. Hold her. She can't last, it won't be long now."

I looked at the beautiful woman holding my daughter and I broke inside. This was killing her. She couldn't even look me in the eyes because she feared I blamed her and wouldn't love her. How terribly she was mistaken! I couldn't have possibly loved her any more than I did right there in that moment!

I held them both in my arms. I wept silently inside. And, Roxan ate.

Day 3:

The doctor comes in and says: "Make your peace, this won't..."

I cut him off. I've had enough. Couldn't he see his words were throwing Earth on a casket that wasn't even in the ground yet? Couldn't he see the love of my life crumbling as he spoke? Didn't he understand that we get it? I flipped.

"ENOUGH! Get us the F out of this hospital, NOW! CAN'T YOU SEE WHAT THIS IS DOING TO HER?"

So, against medical advice, I had my daughter and her mother transferred to another hospital.

And, thank God I did.

On that 3rd day, we were transferred out to a very nice children's hospital. I didn't expect any different result, I just knew we didn't need to keep getting beat down with that negativity. We were suffering enough.

Anyway, at the new hospital, we all get settled in. Doctors and nurses fussed over Roxan and made sure Mom was good. NEVER ONCE telling us our baby would die. Instead, they immediately started telling us what they could do in hopes of this, or that. They did make clear that Roxan's chances were slim at best, but once they said that, they moved on to only discuss what they are going to do to shoot for the impossible. To save my baby girl.

2 weeks roll by:

Roxan is still here. Eating like a savage! All of her systems are in tatters, her brain and heart aren't functioning right. She should already be dead. She never got the memo! But, fact is, Roxan wasn't getting better. Bigger, yes, but not better.

The truth dawns on us:

Without a heart transplant/surgery, Roxan will eventually succumb to her issues. But, she was too tiny. Nobody felt comfortable doing her procedure. She was going to die.

Prepare for chills with the next part:

God enters our lives... in a most unique, Godly way.

About 2 months before Roxan was born, her mother and I went out to buy a new car. We both fell in love with a Mustang Convertible, 40th Anniversary edition. Sunshine yellow, black top. Sweet ride. Why does this matter? Well...

Like any first-time mom, Roxan's mother was aching to do some nice pregnancy photos. I mean, this is as happy as she has ever been, and she wanted to do all of it! So, we hopped in the Mustang and went to the causeway to take some pregnancy photos of her on the Mustang in front of the ocean at sunset

There are no coincidences... so it has to be Divine:

While we were unloading the car, a man came running up to us. He was frantic! It's clear he was looking for someone or something. He was speaking so fast, and his accent was very thick. It was hard understanding him. I finally got him to slow down and explain to me the issue.

You see, he was searching for his dog. The pup got off the leash and bolted for the parking lot. The poor man was scared to death the pup would end up hit by a car

"I'm sorry, sir. We haven't seen any dog. I hope you find him."

The man turns and leaves. We finish getting what we need from the trunk and go to close the front doors to the car when we hear it:

"Yao... yap yap yap."

There was a puppy in my back seat! The little fella must've jumped in the open door while we were unloading the trunk!

The pup jumped excitedly up and down on Roxan's mom's legs.

"Sir! SIR! IS THIS YOUR DOG?"

My yelling got the gentleman's attention. He came running back and told us thank you repeatedly as tears fell from his eyes.

We thought no more of it. We took some amazing photos that day The man and his pup all but forgotten as we got lost in the photos and family we were creating.

Fast forward back to the hospital. Roxan's going on 3 weeks old but is not looking good.

I'm sitting in our room, head down, tears streaming (I had some alone time as Roxan had tests and Mom was showering). I dare not cry in front of them. They needed me to carry their pain, their hope, their fears... not crumble. So, I took a minute to bleed it out before they got back.

"Oh my goodness, my friend! What are you doing here?" A man's voice.

I look up confused. Surely he isn't talking to me. But, sure enough, he walked into my room and extended his hand. The fog of pain and despair started to lift, but I still couldn't place him...

I broke in sobs: "It's my daughter. She's going to die. She needs a transplant, but they can't do it. She's going to die," and I lost it.

This man puts both hands on my shoulders, forces me to meet his gaze, and says to me:

"My friend, you saved my dog. I will save your daughter!" His chest pumped with pride as he continued, "I am Dr. Natraj Ballal, and I am chief pediatric surgeon. Do not worry!"

(Yes, that is the doctor's real name. He deserves all the respect and attention in the world. I don't know if he even remembers us at this point, but we'll never forget him.)

When he spoke, those words that day at the causeway came flooding back. This man standing before me was the very man whose dog jumped in our car that day.

Roxan continued to eat, get bigger, and gain strength. Soon, she was ready...

And Dr. Ballal performed her surgery. He saved my daughter's life and gave us hope.

Since then, Roxan has undergone multiple craniofacial reconstructions, hip displacement surgery, a complete mastoidectomy, surgery on her foot. Her lungs have been pumped multiple times, back surgery (she has magnet rods and pins that need adjusting continuously as she grows), the list goes on and on.

Roxan was recently diagnosed with epilepsy and suffers from severe seizures requiring a constant caregiver.

She was rushed in for an emergency craniotomy a couple of months back.

All of this has left us exhausted and strapped for funds. Roxan is going to require constant care and treatment with surgeries, rehabs, special instruction, and medication throughout her life. I am asking you to please, do what you can. Share her story. Help me make sure her future is as long and full of life as possible.

Your donations will be used to give Roxan the life she deserves, establish a home base here in Delaware, and provide her and her siblings all that they need while we tend to Roxan's needs.

Thank you,

Roxan's Dad