‘I’m waiting for my daughter to die. Every day I wake up, she might not.’: Mom gives birth to ‘rainbow baby’ with ‘rare, terminal’ Sanfilippo syndrome, makes ‘each day count’

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“It’s been four years since Chloe’s ‘D’ Day.

She was my rainbow baby, born 2 years after I had miscarried in a very traumatic way. I haven’t told many people this, but I would like to give you a little insight as to why Chloe is so special to me.

Two years before Chloe was born, my water broke at just 20 weeks pregnant. I had just taken a nap and thought I wet myself. It’s not uncommon for young moms to be unfamiliar with some of the signs of labor. I was in pain, but I had been numerous times before, so I didn’t think it was too serious. Eventually, I went to the emergency room but they just wrote it off. So, I did too.

Courtesy of Cydnee Harrell

The next morning, I felt like I needed to go to the bathroom. And before I knew it, I was delivering my child. The father of my child called 911. All men showed up, not a single woman. Because I didn’t deliver the baby all the way, it was a struggle to get on the stretcher. The bags you use for vomit? Yeah, I had to place my baby in one of those and push it up to my woman parts to get on the stretcher. Once I got to the emergency room, the nurse came in because I was screaming and crying. She said, ‘You need to calm down. You’re scaring the other patients.’ I still had to deliver the placenta.

After everything that day, I had to walk away and leave the baby. He didn’t survive at all.

Two years later, here comes this beautiful 6 lbs 2 oz of blonde hair and blue eyes. I remember holding her for the very first time after delivering her. It took 28 hours for her to get here. I just cried and cried. I told her how beautiful she was. How I would protect her. That I would never ever let anything bad happen to her. She made everything right. She made it all worth it. After losing her brother in the way I did, any life I was grateful for!

In all aspects, Chloe was healthy. By age 3, she had hit all the milestones. But, suddenly, seemingly out of nowhere, she began to lose her abilities over time. At that time, her younger brother Caleb had now begun to surpass her milestones that I didn’t even know were milestones!

Courtesy of Cydnee Harrell

She was hilarious though. She would sleep in her highchair. She would put food on her head to get her baths. She would hide things. She would wake you up with the biggest smile and say, ‘Get up.’ Among some of her favorite words were, ‘Brother. Caleb. Milk. Eggs. Chocolate. Ice cream. Hi. Bye. Mine. Mommy. Daddy. Dog. Cat.’ She would put 5 shirts on and 3 pairs of pants because she couldn’t decide which to wear. She would give Caleb bottles and say, ‘awwww’ when he cried. She’d jump on trampolines, swim in pools. So much life in that little girl!

Courtesy of Cydnee Harrell

Over time though, she lost all of that. Yet, Caleb was still progressing. They had completely switched roles by then. He became the older sibling to Chloe. The doctors said suspected she had autism. From there out, I dealt with poop, sleepless nights, Spongebob or Tinkerbell on REPEAT. She would destroy things and was starting to get sick a lot, mainly ear infections and respiratory problems. Then, she completely lost her ability to walk, drink, or eat. So, at 10 years old, I had finally had enough with the run around from the doctors. Clearly, Chloe was going through more than just autism.

Courtesy of Cydnee Harrell

On one particular occasion, the doctors tried to discharge her again without giving us any answers. I was sitting in the hospital alongside Chloe in her hospital bed. With 10 residents, 5 doctors, and 4 nurses in front of me, I said, and I quote, ‘Discharge her and not find out what’s wrong. I promise I will sue every single person standing in this room today.’

Afterwards, they decided to keep her and run every test known to man, and for every childhood illness they could. They brought a geneticist in the day before Chloe was scheduled for a g-tube insertion into her stomach so I could administer medicine, fluids, and food. At this time, we had figured out she had been having seizures. The geneticist said that it was an MPS disorder, but she wouldn’t know which until the lab results where back. That night, it took everything in my not to hit up Google.

Courtesy of Cydnee Harrell

The next day after the surgery, after Chloe was knocked out by all the drugs, I sat and Googled away.

People tell you not to Google to find out medical advice or to self-diagnose. Well, I did that with Chloe. I couldn’t help it. After a short search, I knew exactly what she had. I came across each MPS illness until I stumbled upon the words ‘sanfilippo disease.’ It fit her to a T. That was her.

When I searched children with this disease, a little girl (who I would later find out to be Bailey), looked identical to Chloe. As I searched, I realized that Chloe’s life would be short. I panicked and thought it would be similar to a terminal cancer diagnosis where I only had a year with her, or less. But no. This disease slowly takes. So slow that it is almost not even happening until you look back at what she used to be…who she is now.

Courtesy of Cydnee Harrell

She is not who she was then. 10 years ago she had her her lifetime ahead of her. 5 years ago, I thought she would outlive me and I would need to find something for her when I died. 4 years ago, I found out that instead of her burying me, I will one day bury her.

Essentially, I am waiting for my daughter to die. Every day I wake up, she might not.

Courtesy of Cydnee Harrell

Even through knowing all this, I’m not mad at God. After all, he gave his son. He knows what it is like to watch a child go through something you can’t fix. Something you can’t make disappear by just kissing a boo boo. He isn’t asking me to do anything that he hasn’t done himself. Knowing this brings me comfort to an otherwise devastating situation.

Courtesy of Cydnee Harrell
Courtesy of Cydnee Harrell

God blessed me with two heroes, each in their own right. Polar opposites. And I am so blessed for both of my rainbow babies.

Chloe is one heck of a warrior. She kicks butts…mainly mine everyday. I wouldn’t have it any other way.

Each day is a blessing.

Each day, we make it count.”

Courtesy of Cydnee Harrell

This story was submitted to Love What Matters by Cydnee Harrell of Medart, Florida. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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