Rare Disease Day: Emi’s Courage

 Emi’s Courage

When we receive letters from the parents of children with chronic and often rare diseases, the first thing parents tell us is about the strength and courage their children have. When we learned of Emi’s courage we knew we were learning about someone special. Jules daughter had a rare disorder and has often asked how we, as adults, could develop the courage and strength of these children when we face our own chronic (and sometimes rare) diseases? Jules says that while she was somehow able to set aside her own symptoms at that time she was never able to set aside her fear. A child can go to bed with hope that the tumor or the pain or the illness might get better tomorrow while we go to bed thinking over and over, “tumor tumor tumor tumor” until the tears send us into a terrible sleep.

Maybe if we took a moment to learn the story of Emi and her bravery we would understand true courage and strength and from this wee bit of a girl, we might use one ray of her sunshine to warm us when we are feeling the cold of chronic illness. One ray of her light would make the whole of one of any of us, the whole of YOU, Chronically Awesome.

Chronically Awesome first heard about Emi from her mother, Rachel. This is what Rachel had to say in her email to us:

(Emi)…suffers from intestinal contractions and has pain every day. We have never been given a  diagnosis and Drs and specialist have told us they have never seen these types of issues. At one time they told us this was just her life she will be in pain, there was nothing they could do. She has several ailments that contribute to her health she has a colostomy bag because of an impaction she had in April. She has had 8 surgeries 3 last yr alone, and we still do not know after 3 years what is causing this We have been to hospitals in Dallas-Fort Worth Lubbock midland and Odessa TX

We are now being referred to Ohio

At this point, we are desperate and reaching out trying to find someone with similar experiences or a doctor that can help us.” – Rachel

“…this was just her life she will be in pain, there was nothing they could do.” That is what the doctors told her.

If you are reading this, and you are a parent, is this what you would stand still for? Yeah, we didn’t think so.

Everything Is Figureoutable

Emi’s story had to be told, and to tell her story the best place to go was the meeting place of the masses: Facebook. If you visit Emi’s Facebook page today there is a quote on the header, it says “Everything is Figureoutable”.

emi's fb header

This is what has to be figured out:

“My Emi was born 7/17/13 with her intestines in her umbilical cord, We were told it was omphalocele, she was never diagnosed with any problems.
She had surgery the following morning in Lubbock TX. During surgery, they found her intestines were not connected and her stomach was on the opposite side of her body.
We had bowel perforation reconstructive surgery at 7weeks old. Due to a tear on her small intestine, her intestines shut down. She acts like a short gut baby but is not. She has been tested for cystic fibrosis 5 times. (And she does not have it)
At her year old check up her then Dr told me that she looked like a normal baby and he didn’t believe she made it this far. He had seen babies with less complications than her and they did not survive. But I knew my Emi was a fighter!
She is now 3, we had hospitals stays the first year and a half every month up to 3 weeks at a time. We were told she was not able to absorb her food and was unable to thrive. She had severe diarrhea at times that she would become acidic. She was 3 months old and was at her birth weight. We were then placed on TPN for 8 months until she got an infection in her line that had gotten into her blood stream. I asked her GI if we could possibly try to feed her and see what milk supplement we could give her. We went through 9 different formulas. And have managed to get her to 25 lbs. We have pancreatic deficiency where she takes creeon up to 6 capsules a day. We have always had slow weight gain but as long as we don’t lose weight we are good. We have a B12 deficiency as well and take injections once a month. We now suffer from chronic pain her intestines have spasms and contract on her we do not know why and have been told this is just her life she will hurt like this. Her stomach gets distended for long periods of time and makes it hard for her to breathe at times. We have days and nights of constant crying 2-4 times a week.
This has been going on for over 2 yrs she was on milk supplement PediaSure, peptide, boost, and as of a month ago has not wanted nor most food. We have never been given a diagnosis for her condition all we have been told is she is “rare” and have not come across a baby with her “type of issues”
Her GI doctor has basically told us he just doesn’t know why she’s hurting. Fort Worth told us the same. She will be referred to Ohio for out of state care, We just don’t know what else or where else to go with her. I decided to start this page in hopes of finding other families that have children with similar issues. And to ask to please continue to pray for Emi, her comfort, and our family.”

Emi Is A Fighter

emi's courge

This is Emi, she is 3-years old. Our Medically complexed warrior. We are trying to reach as many people as we can in hopes of trying to find another child/family with the same issues as her. She suffers from chronic internal pain as well as several other ailments. We have not been able to find relief for her. We have not been able to find a doctor that has not been able to tell us what is going on or why. We will be traveling to Ohio soon in hopes of getting care and answers. Please like and share her pain and join us in her journey as she fights to be pain-free.

Emi has the courage and the bravery to fight harder than some of the adults we have met over the last weeks, months, and years. She truly is Chronically Awesome.

 

You can help Emi and her family in their fight. The travel expenses and medical costs have (and continue to be) enormous. 

After traveling to three major cities, Emi and her family are headed to their fourth.

Yes, we know that when other individuals and organizations have asked us to raise money for groups other than our own 501(c)3 we declined. Emi, however, we believe that her project falls in the lines of our current mission: helping chronically ill children become Chronically Awesome which is why Emi will receive an art kit as well.

You can help support Emi and her family with $1 or $10. Whatever makes you comfortable. You can help Emi’s family with a note on their Facebook page or here in the comments. Sometimes a note of goodwill or a prayer goes farther than money.

Emi’s Courage Is Chronically Awesome Chronically Awesome

 

 

 

 

pink sunglasses

You Really Knock Us Out With Those Pink Sunglasses

Emi Poses For The Camara

You Go Girl

Sign on light pole looking for lost colostomy bag

I hate when that happens

3 thoughts on “Rare Disease Day: Emi’s Courage

  • Lord in the name of JESUS we ask you today to show Dr’s how to care for baby Emi, Lord in the name of jesus we still believe and have faith that this mountain will be gone, will be cast down and thrown into the sea never to see again!! Lord we will stand by your word that baby Emi is healed from the top of her head down to the bottom of the soles of her feet, because the stripes that you took upon your back for us!! Lord I come in agreement with This family that Baby Emi is and will be healed!! In JESUS MIGHTY NAME I PRAY AMEN!

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