Mollie was a healthy 6 year old in 1st grade when she started falling a lot, getting tired, and just not being her strong independent self. 

Her doctors learned that her thyroid numbers were high.  She was diagnosed with Hashimoto's Disease. Despite her diagnosis, she seemed to get worse.  Jessica, her mom, kept calling the doctors. When Mollie laid down, she couldn’t sit back up or even roll over. She needed help doing a lot of normal day to day things.

The doctors finally admitted her to Children's of Alabama Hospital at UAB for a 2nd time. After 3 days, she was diagnosed with Juvenile Dermatomyositis.  She was started on IVIG infusions, Methotrexate shots, and steroids a few hours later. Within two and a half weeks she was diagnosed with two different diseases that were extremely affecting her body. She was on steroids for 9 months which resulted in cataracts in both eyes. She continued IVIG and the Methotrexate shots for a long time. She also took several other medications to manage her diseases.

Mollie is now a 14 year old eighth grader. She does physical therapy twice a week to keep her muscles strong. She still takes lots of medication. She doesn’t remember life with a healthy body before Juvenile Myositis. 

Read about Mia's Myositis journey with Juvenile Dermatomyositis (JDM) in her own words below.  Thank you Mia for bravely sharing your story with us!

This is my story. This is my life.

I. Am. A. Warrior!!!

Hi! My name is Mia Blalock, and I have Juvenile Dermatomyositis. Yeah, I know, what a mouthful right? Most adults can’t say that diagnosis, but I had to learn it at the age of four.

I was born with this disease. And unfortunately if we can’t bring more attention and awareness to it, a cure might not come in my lifetime.

When I was born I had severe Jaundice. I was kept in the hospital extra time after I was born to bring my bilirubin levels down. After the doctors sent me home my mom and dad took me to my pediatrician the next day to have me retested. My leaves were so high that I was rushed to the Joe DiMaggio Children’s Hospital. They had a room all ready for me. I was placed on a UV light with only an IV, eye mask and diaper. I stayed  there for about a week. I was sent home with my own UV light and had to stay on it at all times.

My levels started coming down, but my mom knew something wasn’t right. (Little did we know the UV light to save my life from one medical condition was most likely the cause of the flare of another one.) I started crying out in pain and I had a rash on my face. I went back to my pediatrician and they ran all kinds of tests but he said it was just Cradle cap. Mom told the doctor she didn’t think that’s what it was especially cause it didn’t look like normal Cradle cap and it wasn’t on the scalp of my head, it was my face, and trunk of my body. The doctor assured her that’s what it was though and sent me home with a STRONG steroid cream for all over my body and meds.

I started getting better. The rash slowly went away and I stopped crying from pain. I didn’t move much though. I didn’t start crawling till I was almost 1 years old, and even then I mostly just belly crawled with my arms only.

I started to act like a normal baby at about a year and a half.

Fast forward a few years… at age four I started pre school. I LOVED IT!!! That and church were my two favorite places . Mom said if I couldn’t be at one of those two I was upset . But it was short lived. I started having leg and back pain. At this point I wasn’t diagnosed with JDM so everyone thought maybe it was growing pains. Then I started sleeping all the time. I was only awake for a few hours a day. Then came the rash and low grade fevers. All of my family said they thought something was wrong and we needed to start looking for more answers.

Mom told my pre school teacher to keep her updated if she notice any changes in Mia. The teacher told her right then that she had noticed her little helper (me) didn’t want to help much any more.  That I spent most of my time at school with my head on my desk.

This was the start of our search for answers. Mom told the teacher to keep her updated and she started taking me to a bunch of doctor appointments with my pediatrician. Lots of blood work, research, and doctors making guesses. Then started all kinds of meds. The doctor thought maybe some kind of infectious disease. So she prescribed me a strong antibiotic. The Pharmacist that was filling the prescription told mom that she thought this was too risky to be giving me if we weren’t sure that’s what I had a thought maybe mom should get a second opinion from the doctors at Children’s of Alabama. Mom took the meds and thanked her, but something she said suck with her, and God was telling her not to give me the meds.

The next day…

The teacher told mom I stopped going to play time and when she put me in the floor with a few toys a few feet from my desk she found me baby crawling back to my desk and couldn’t get up in my chair.

I started getting worse every day. I couldn’t climb stairs, then I couldn’t run, I tripped on nothing all the time. Mom had enough! She was not waiting any longer. My family advocated for me!!! I was rushed to the ER at Children’s of Alabama. They ran lots of tests and did x-rays and gave me pain meds. Again, they found nothing . But the hospital promised to send my blood samples to a Rheumatologist there.

The very next day the Rheumatologist spoke to me and my mom and dad. And I received the news, I was diagnosed with Juvenile Dermatomyositis; diagnosis date Match 8 2017. This was such a confusing moment. We were so relieved to finally have answers! And then so scared at the same time of what that might mean.

My four year old body was failing me. My immune system was fighting against me. It was attacking my skin, my muscles, my veins, my organs, pretty much anything that’s a tissue was being destroyed. I wasn’t going to make it without some serious intervention.

At this point I couldn’t move much. I couldn’t do the simplest of tasks such as roll over, lift my head, feed myself, sit on the potty, my mom had to hold me in the shower and bath me, I had a hard time eating and drinking… the list goes on. I was completely independent with these tasks before my flare.

But we were not giving up! We started the treatments; steroids, multi vitamins, antibiotics, methotrexate shots, IVIG infusions and Omeprazole. And lots of sunscreen! Lol! I also began physical therapy to hopefully build back the muscles that began to atrophy.

The meds took a toll on my body as well. I was admitted to the hospital a couple times for meningitis, possibly from the infusions. And when I started to walk again I fractured my back, due to my bones becoming brittle, possibly from meds is what the doctor thinks.

This was a long road, and I still don’t have full strength in some of my muscles; I might not ever. But I am blessed. So many others have it worse than me.

Skip ahead a few years…

June 29, 2022 I got an answered prayer ! I’ve reached remission!!! There are no words to describe the feeling when I heard those words, it can only be experience.

I will continue to pray for others, and for the day when we all get to rejoice because we hear the word cure!

I hope my story helps reach others and they might be comforted if they are going through this too, or help others understand more about us.

Meet Desi  Atkins from the Words of Her Mother

Desi was a very active 22 month old toddler who loved the outdoors. One day, she developed a bright red nose which we attributed to a sunburn. Over the next few days, the “sunburn” spread across her face and she developed what we described as red warts on every joint of her fingers and toes. She became very tired, not the spunky toddler we knew.

Thinking that it possibly could be eczema, we took her to our dermatologist. Because JDM (Juvenile Dermatomyositis) is so rare, most doctors have never seen it resulting in a very long and difficult diagnosis process. We were so fortunate that our dermatologist had seen it and immediately referred her to Dr. Peter Weiser, a rheumatologist at Children's of Alabama. He began immediate and aggressive treatment….so much for a toddler. Methotrexate shots, large doses of steroids, IVIG infusions, biopsies and blood draws.

She started dance classes shortly after her second birthday in order to keep active and moving. That was 13 years ago. She has endured it all with a warrior’s courage.

Today at 15, she is a member of her high school danceline team. Many days are still filled with pain often needing physical therapy for relief, but she refuses to give up.

She is very excited to be a part of the upcoming Moon Walk. Awareness is key for diagnosis and treatment for these JM (Juvenile Myositis) Warriors.

Meet Tiffani Hortman in her own words with added information from her mother.

Here is my journey:

My name is Tiffani Hortman and I’m 34 years old, I come to you today to tell you a little about my journey with dermatomyositis! You see at the age of five my parents noticed I wasn’t running and playing like most kids my age. After many tests they thought it was due to having two holes in my heart. Doctors went in and repaired the holes and after little to no improvements they started to dig deeper!

Somewhere between 1995 and 1997 I was diagnosed with dermatomyositis, I remember countless hospital stays, doctors’ appointments, medications, blood test and so many other things. Knowing all of the things I was going through at such a young age was difficult, I saw the stress it put on my parents who owned their own business.  I remember my doctor sitting my parents down and telling them this would be a long difficult journey and he wasn’t lying!

At the time of my diagnosis two other girls were diagnosed at the same time! But of course I was the difficult case, out of the three of us I was the only one who was placed into a wheel chair and told I may never walk again! Through swimming as therapy and medications I gained my strength back slowly.

I wasn’t responding to treatments like my doctor had hoped and he was about ready to send me to the Mayo Clinic for help when he came to us with one last idea. That idea changed my life! My 5th grade year I started a treatment that at the time had never been used on someone with dermatomyositis let alone a child! I was placed into the hospital for my first two rounds of IVIG and it was life changing! We noticed a huge difference right away.  I began horseback riding that year also and it was life changing! I began walking fully when I hit high school in 2005! 

My journey with dermatomyositis hasn’t ever been easy but I am honestly blessed to have this condition! Without dermatomyositis I wouldn't have had so many of the opportunities that I’ve had growing up! I don’t know who I would be without it to be honest! I’m sharing my story with you today because I want you and your family to know that no matter what JDM throws at you, you will get through it!

In March 2014. I was getting ready to turn 25 in April.  When my now ex-husband and I went to a checkup with my doctor, I received some news that I never thought I would hear. I got the news that there was ZERO evidence of disease in my body and that I was in a Full Remission! These were words I never thought I would hear!

On September 27, 2014 I married my now ex husband  We have now been divorced about 4 years! I personally suffered a miscarriage 5 years ago and the divorce took place a year later! I share that because doctors told me for years I couldn’t have kids! But God had other plans for me, I honestly have taken that loss as God saying hey you can have kids it just wasn’t your time yet! I share all of this with you because I want you to remember that even though this path may seem super dark right now there is a very bright light at the end!

Now a slight medical update 2020 I started having a ton of ankle pain in my right ankle I’ve had both knees straightened and both ankles. My first ankle surgery was in 2010.  It lasted until 2020. When the pain returned in March 2021, my new team decided to fuse my ankle.  I agreed as long as we get rid of the pain.  The surgery went well even though recovery was hard. It's hard to keep me down!

Fast forward some...I have the surgery and heal up.  Then, we discover I’m having middle leg pain while walking.  We X-ray it and discovered that I broke the middle of my leg some how.  I go back in the boot.  I finally come out of the boot by December 2021 and things are ok! January rolls around the swelling and pain is back and just as bad as before… February they X-ray again and find that the surgery had failed.  My ankle had collapsed into my heel!

I had a secondary fusion in my right ankle one day after my birthday on April 19,2022! They went in removed last year's hardware, added two screws in the bottom of my foot to shift my heel to the right so I wouldn't walk in the outside of my foot! They fused at the subtler joint (the outside of your ankles).  This surgery has been much easier then last years but it is a 4 month recovery period with no weight on the foot!

As of December 29, 2022 I’ve had my 3rd right ankle fusion after firing my original doctor from the first two (longer story) but my new doctor got it perfect. I was healing and started walking again in a boot.

May  2023 update,  I am officially out of the walking boot after 2 years in it! My new surgeon finally got it right! He did a bone stimulator that I’m still using to help my bone continue to grow as well! I do still have other joint involvement but all of this is just after stuff from my 18 years on chemo and steroids.

I’m currently in the process of trying to write a book about my story and potentially writing a children’s book too!

I want you to know that no matter what I am here, I’m here to listen when you feel like no one else gets it, when you feel like life is totally against you! I understand and have felt each and every one of those things. Dermatomyositis isn’t fair by any means but it’s something only extra special people have in common. We make up one giant family for sure!  Please don’t ever hesitate to reach out to me! I will list my information below as well!

Love always

Tiffani Hortman 

Email: Tiffanihortman@icloud.com

Below is a story told by my mom when we were in the beginning of our journey!

When Tiffani was five years old, she was scheduled to go to the Scottish Rite Hospital for the first of many diagnostic tests. Her Dad and I were very worried, but we tried to be strong. Tiffani has always been a happy positive person so she sang and talked the whole way to the hospital.

I don’t think she will ever know how much that lifted her dad's and my spirits. The test required that Tiffani have several needles inserted in the various muscles in her body and then have electric shock put in them to stimulate their response. She could not have any pain medicine and we had to hold her so she wouldn't move. THE TESTS SEEMED TO LAST FOREVER!!!! After the test were over we were riding home and Tiffani was lying in the back seat of the car. We love to make a game of watching the clouds and she happened to be watching a large cloud bank. Tiffani was talking about the different images she saw in the clouds trying to get me to see the same things she saw.

Suddenly, she said "Mom, do you see that man with the little girl?" I decided to play along and said, "What is he doing with the girl." Tiff said, "Mom it is Jesus holding me and he says that I am going to be okay." I began to cry when I realized that Tiffani had what I needed, the faith of a child. There have been many tests and surgeries and medicines since then but, Tiffani has never lost her faith and that has helped to sustain her father and I through this ordeal. We are so thankful for Tiffani and what she has brought to our lives.