Chailei’s STEC HUS Battle

08/01/2026

In honor of 💜Hailey Roberts💜, a 💙Parker's Promise💙 Angel, please take a minute to learn how to protect your family.
Hailey's mama said: "If this helps even one child, it's worth it 💜"

07/31/2026

We are coming up close to the date that we will always remember and changed our lives.
The way we take precautions, the way we think on safety of the environment and the way we take our faith✝️
Some people have been re asking the same questions we had to answer multiple times last year.

Where did she get it, what was it from, did the drs give you proof, does she remember anything on waking up, and what did it look like etc.
Or sadly the statements of that can’t be true.
Does it matter where she got it? Nope Are we placing blame on people. No.
Are we more cautious at places… yup 🙂

Some families whose child that has gotten the e.coli from a goat years ago still haven’t touched or been near a goat for example

“Just a matter of environmental factors that anyone could have gotten”- per infectious disease dr and other attendings in August AND in February when we got the chance to meet some again in Neenah when Chailei vomitted blood a lot of blood.

Even though we can answer some questions easily some are harder to explain on the waking up part other than one worded answers.
Horrifying, sad, loud, spontaneous… especially after 5pm…

Chailei chose to show a video I have that shows what it is like for a person with a brain injury to come out of a “post amnesia state” after an injury or being unconscious for several days.
It can be hard to explain.They are starting to be more touchy(sensory), vocal, and trying hard on the inside to come out. This was week 1 at Shirley just before we started the nightmare week of Ritalin.
Chailei still asks what she was like in MKE or Chicago. If I can’t answer she goes through my photos/videos I took to help show the drs what she’s doing when they are gone.

She starts to feel the months being stolen from her in the beginning but at the end she can say she got another chance another chance at life, another chance to experience things for the first time and live in another “world.”
Whether it was zombies from Disney channel(sadly I was not Addison lol I was more Eliza), angels or classmates holding her hands, or fighting with her brother and dad when they were hundreds of miles away lol

How many people can say that they get to experience things for the first time again?❤️

07/24/2026

Chailei's brain clinic was a successful one:-)
So successful that it was her last one(knock on wood lol).
Being one month away from her 1 year anniversary date she has knocked out urology, GI,nephrology(does have to go for blood work check in Sept) and now neurology.

Things are healing 👏Prayers are working🙏Miracle still in the making❤️

Only saw one of the many familiar face today we had in PICU or W7 but it was still bittersweet because she remembered everything on Chailei and how both Andy and I were feeling on the unanswered questions.
With being frustrated, scared, and annoyed we couldn't get any concrete answers.
But within this last year being part of Parker's promise family and seeing more and more kids have it affect their lives.....it affects everyone different in so many ways. It is all on the children's bodies to be able to fight it and control it when it's full force. The drs have to fight this e.coli/HUS blind in a way because it can be a certain way for one child but then totally different for another.

The next time we will be back in Milwaukee should be next year for neuropsychology eval.

During some of the NUMEROUS activities with speech, neuropsych, and PM&R : does show Chailei still needs some OT,PT,speech and vision therapy.
Even though she BLEW away everyone today with how well she has done since January . a few scores did show her body is still recovering from being Inpatient solong(energy,flexibility,strength), and cognitive set back which involves understanding.

That area can be more of misunderstanding of vocabulary , explaining of things, instructions or even simple math problems. Also could be she needs to think about things a few moments longer than others to answer a question.
All of these things are 100% normal for someone who suffered from a TBI at some point in their lifetime.
On a a positive note though! All these can be fixed with some more hard work. Or they can be long term till even after graduation where she takes the time to know what she needs to learn something🤷‍♀️ only she can decide that right;-) Either way we are so happy with how far she has come this year.

"Having her be athletic before she got sick is a true advantage" was a phrase a quite a few times today. And couldn't agree more 🙂
They can see potential for her to be back physically and cognitively the way she was before getting sick. Each day will bring her closer there with the help from her therapists, the effort she puts into it, school when it starts, and ofcourse the prayers we do everyday.

She walked in today being SUPER EXCITED for the cafeteria pizza and breadsticks lol (mom wanted a buffalo chicken wrap) but with our appointments taking to long we missed that opportunity and had to go to Kopps which was just as good 🙂 she celebrated with a root beer float and French fries to dip it into 🍟🍦

From the evidence they had on Chailei last year when she was inpatient at the time…to what they told us how she would be…. To where she is now is remarkable to say the least.
In between her sassy phrases she gave the drs today I could see a glimmer of hope,sense of fulfillment and joy in their eyes. Chailei is a case they will always remember and go back to look at if/when another child is wheeled in with STEC. Are we glad Chailei went through this? Absolutely not. I wouldn’t wish this on any child or family. But knowing Chailei’s story could help other guide another case even in a little way makes us glad she did❤️❤️

She still has more goals to accomplish to overcome her set back which I will post more to show everyone what your prayers have done and helped her get to this point🙏

07/24/2026

Brain clinic day in Milwaukee today!
6mth check after being home…. And less than a month away from her 1 year mark

07/22/2026

Our church is not only a place where we practice our faith, but also a place where we practice the tuba when mom is working❤️
She loved showing everyone who was there what she learned her first day.
✝️🎶🎵

07/22/2026

Hey hey everyone!

August is knocking on our doors and I know I’m not the only one wondering where July went or just the over all summer.
With the additional summer time activities we decided put therapies on the back burner a little bit by only going in a few times a month.

Definitely not saying she isn’t working on activities she would be working on in OT,PT, speech though with these extra things😉
she’s completed volleyball, soccer, basketball and dance clinic all at the high school the last few weeks(on top of going to tutoring, swimming, newly band lessons, her new hobby baking)

definitely gave her insight on how she is NOW compared to where she was last year. It’s hard to see any child struggle but it was a blessing in disguise because those sort of moments gave her a bit more determination to want to get back to the way she was physically because she remembers how “easily” things came to her now she wants that again❤️

She has been participating in gymnastics at the Y for simple tumbling and she goes to me “mom I don’t mean to be cocky but I’m going to get this last move(backflip with roller) so I can move up to tumble 2” 😆 I told her that’s called determination right there you mean and I’m glad to see it lol first time I’ve heard that talk since last year too and it was such a prayer answered when I heard that phrase with her attitude.

This week we’ve started swim lessons again since she “lost” the memory of how to get out of the pool safely, go underwater without nose plugged, simple strokes etc. BUT thanks to neuro plasticity in the works, muscle memory is coming back. She may look like a fish out of water some times but it’s coming back to the surface🙂

And her new adventure she JUST started is band! She has started playing the Tuba of ALLLL instruments lol yes it is as heavy as her and almost as tall but she’s been practicing everyday this week.

This Friday she has her 6 month brain clinic check up in Milwaukee!!!
She’s excited to see her crew she “beat up”, of-course the pizza for lunch, and to see if more images will stick as she walks through the halls lol this appointment is going to be a lot less scary compared to her first in January with all the work she’s put in since. At the same time it’s going to be a mix of emotions for mom. Each day we can see how her brain was affected by the E.coli in a way whether it still be vision which is a LOONNNGG road yet, memory loss, word processing, coordination and more . When we complete one stage of healing a new chapter reopens. But each day thanks to Chailei’s faith and prayers answered she still is on the road to a 2nd chance at life we can see and notice.

Chailei wanted to pick today’s post picture. She knows what August will mean for us for the rest of our lives knowing tears will be shed. And to say we are not grateful for all that everything has done with us and for us would be impossible because with everything that has happened has not only reshaped our lives but our hearts and faith❤️💕

07/14/2026

These Brooks adrenalines were first put on our feet November 13th, 2025. Our last day at children’s Milwaukee to our new chapter at Shirley Ryan in Chicago to back home in January as well🙂
There are many memories in the soles of these shoes.
To the many miles she took to regain her life, the many miles I walked through out Chicago back and forth to her, blisters, blood from the blisters lol, tears of uncertainty to the tears and smiles of determination.

Not as many races as we’d like in them before we had to retire them tonight but many finish lines were crossed in them❤️

Now for some new ones soon hopefully(if this girls feet could pause in growing for a bit lol any one else’s 10 1/2 yr old have 9-91/2 shoe size??)

07/07/2026

Power of prayer worked for Chailei and still is.
Emma is still in need of prayers🙏

07/07/2026

When Chailei got sick in August and I told them it was shiga toxin e.coli that branched to HUS everyone was like oh what is that I’ve never heard it….

Depending on how old you are I bet you remember the mid 90s with the “Jack in the box” out break…. It was the same strain of e.coli Chailei and many other kids right now fought or are still fighting against.

Chailei’s point of contact was not any meat she ate.

This was sent to me yesterday from Parker’s promise after seeing a e.coli story line from a tv show back in the 90s.

Anyone remember forensic files? The link below is from one of their 2 episodes that cover shiga toxin e.coli.

We are actually very blessed with a primary care physician who treated kids during this outbreak down in Milwaukee children’s in 1995.

Blast from the past but Its shows how fearsome this still can be.

In 1996, more than a dozen children in Seattle, Washington, were fi...

07/04/2026

4th of July tradition :-)