Support Chloe's Journey to Mobility

It is difficult to type these words. It feels as though they will solidify a nightmare into reality, but each morning when I open my eyes I realize that our reality is currently a nightmare.

Many of you have been following Chloe’s journey all 8 years of her life. I will never forget that hollow feeling when I heard the words “it’s Prader-Willi syndrome”.

From that moment on, everything has been an uphill battle. Basics like learning to roll, sit, & walk took her so much longer than typical kids. Learning how to speak, write, & dress herself. Trying to keep control of her diet & insatiable hunger. Keeping her temperature regulated while she’s outdoors, so that she can still participate to the best of her ability.

Scoliosis was our next hurdle. Protecting her organs was becoming the priority. “Don’t wait too long, shifting organs can put stress on the lungs and the heart”.

As a parent, you’re always trying to do the right thing. Keeping your kids as safe as you possibly can. As healthy as you possibly can.

I did everything I could, took her to every pre-op appointment. All the way from the blood draw, urinalysis, spine X-rays, lung X-rays, heart echos, MRI imaging. All of the boxes were checked. Her team felt prepared and ready to perform. Two top orthopedic surgeons with a neurosurgeon for consult.

I know many of you were anxiously awaiting for the good news with us hoping, wishing, praying, sending good energy.

Chloe experienced an unusual and relatively rare complication. She has an edema, or swelling, on her spinal cord.

The pressure has left her paralyzed, so she is currently in a wheelchair.

I’m certain that will shock many of you to your core as it did us. Words cannot express the pain, sadness, or fear I felt when they delivered the news to us in the hallway of the hospital.

The edema will take many months to heal and we will not know what kind of function return she will have. We are on Chloe’s time and her body is the one in control.

While we are trying to navigate this new additional challenge, we are finding that insurance doesn’t cover or even assist with some of the equipment we will need to help her be as mobile as she can be.

I have also not been able to return to work and am unsure when I will be able to go back. The level of care she currently needs is far beyond what it was before. If you are able to help us in any way, I would be immensely grateful.

If you are unable to donate, please share. A little help goes a long way.

Please continue sending good energy, wishes, and prayers up for her. The journey ahead is long and no doubt more difficult than anything her and I have experienced before.

Thank you from the bottom of my heart,

Chloe's Momma, Chelsea