Addison Shumate & Family

Friends & Family,

I’m creating this GoFundMe page on behalf of my very best friend whose sweet 11-month-old daughter is experiencing the unimaginable. I’m asking for your help to the Shumate family to help bridge the financial gap to assist with their medical expenses as well as time away from work during this incredibly challenging time. Read their story below.

”On September 20th, after picking up the girls from school/daycare, I sat Addison down on the floor to play with her toys while I started dinner. Addison started crying, and I turned around to see her flopped face first on the floor. I thought she might just be tired or fussy, so I picked her up, put her in her high chair, and tried to give her a snack. She couldn't feed herself or sit up straight in the chair. I tried to give her a bottle, wouldn't take it. I laid her down to change her diaper, she tried to roll over both ways and she physically couldn't. I tried once again to sit her up straight, and she flopped forward. This is when I became concerned. She was inconsolable, and at this point seemed to have very little movement or muscle control in her body. I packed up both girls and rushed to the emergency room. Countless tests were run and all came back negative. However, the ER doctor was concerned about her lack of mobility and decided she needed more support from a neurological standpoint. Addison was transferred to Nemours Children's in Orlando.

Upon arrival, we found out that Addy tested positive for Rhinovirus, which is a sub-type of the Enterovirus, aka the common cold... but still no answers as to her lack of mobility. They performed more tests and admitted her to the PICU. Later, the doctor pulled us aside to discuss their findings. The MRI showed that Addison has inflammation on her cervical spine (C2-C5), as well as inflammation on two parts of her brain. "Transverse myelitis" was the term presented to start to explain her partial paralysis. How did this happen? Their best medical explanation is that when any given person gets the common cold, your immune system gets to work doing what it is supposed to do. In very rare cases, your body does the opposite and mistakenly attacks healthy cells. There is no true reason why, it is all simply described as a case of "bad luck".

Our neurology team started immediately with the most agressive treatment plan. Addison was sedated and intubated for nine days while she received a high dose of steroids, as well 7 plasma transfers. Following her final treatment, she was extubated and weaned from sedation. She then received two IVIg treatments. They did another MRI, which showed no improvement in her brain and very little improvement on her spinal cord. The doctors did say the treatments could take some time to take effect.

Over the last two weeks, our neurology team has been working to narrow down an official diagnosis, but until we get test results back, that is hard to do. Right now we know there is damage to her central nervous system, and they've done the most treatment possible at this time. All of the conditions they are considering are extremely rare caused from an adverse reaction to the virus, with similar symptoms and a similar prognosis. Right now, given Addison’s condition and what they know so far, we've been told that even if she is able to make a "full recovery", that she wouldn't gain 100% mobility back. She would never be 100% the same.

So where does that leave us now? Upon continued evaluation, they are not seeing any symptoms corresponding with the inflammation in her brain (cognitive, psychological, etc.) which is a good thing... but this doesn't overlook the severe symptoms from the inflammation on her spinal cord. She is trying to do things she used to do. She tries to clap, play peek a boo, give high 5's... but she can't. She tries and she just can't. Her body doesn't know how to. She has decent movement in her arms, but at this time we still haven't seen much in her torso and legs. They will continue to repeat MRI to monitor progress. We will move forward with aggressive PT and OT for now, in hopes we can see some improvement with her paralysis.

With all of that being said, and what I think we're trying most to wrap our heads around is that the damage to Addison's spinal cord is unlikely reversible or able to fully heal. And the higher on the spinal cord, the more of the body is affected (hers is C2-C5 so almost all the way at the top). Doctors still can't predict what recovery is going to look like; this is an incredibly rare condition. We are starting to believe she's experiencing some pain as well. At this time, doctors are anticipating another 2-3 months of inpatient care and agressive inpatient rehab, followed by an unpredictable time of outpatient rehab. All of this comes with re-evaluations of her symptoms and progress. And all of this comes with an unpredictable amount of progress for Addy. The reality is, this could change the rest of Addison's life (and ours, and Aubrey's) completely. We just don't know what's to come.

For me, it would be almost impossible to be able to work full time with Addison inpatient for the next few months. In the meantime, Todd and I are working together to gather our resources in hopes that I might be able to work part time temporarily and find a way to bridge the financial gap for now.

While we are most certainly trying to stay positive, it's really hard to do when the prognosis isn't statistically good on such a rare condition. I don't think that reality has hit us yet. The medical team is speaking off of their best educated guesses but still, but this isn't something they've seen a lot of and it isn't something that they have found a cure for - we can only provide the best treatment known at this time. We are extremely overwhelmed with gratitude for the amount of love and support being poured into Addison and our family."

If you’d like to donate directly to Pam, please use her Venmo account found here:

https://venmo.com/u/pshu44