Rylie’s Story

Rylie is an incredible 13 year-old girl.  In her short life, she has endured more than most adults ever will.  Despite the rough road she walks, she is kind, loving, and generous.  She never complains about her illness, and takes the multiple needle pokes, tests and medications like a champ.  She has shown amazing resilience, never giving up, despite the many struggles she has.  She is always smiling, positive, and upbeat.  She goes to school when she is sick, and maintains a strong academic footing, despite missing 60+days of school in the past year.  This speaks to her character and drive.  She is a walking, talking example of a miracle.  She’s defied the doctor’s predictions at every turn.   She is alive!  She can walk, talk, has great cognitive function; all things that doctors said would be impossible just a few years ago

Rylie
Rylie

Rylie’s early life started off almost like a dream!  She could walk at 7 months old, speak in complete sentences by 1 year, and was incredibly bright.  She met all of her milestones well before scheduled, and was very advanced for her age.  Just before Halloween in 2009, Rylie was diagnosed with H1N1 flu.  She was 2 years, 8 months old.  She continued to get sicker and sicker and was finally admitted to the hospital, on November 2, 2009.

 

On November 4, 2009, Rylie became neurologically altered. She began having seizures and eventually quit breathing. During this time, the nerves in her brain and spinal cord were attacked by her immune system, and her brain became swollen to the point where she had a stroke, began seizing, then had to be intubated because she could not breath on her own, and was completely unresponsive. She was in a coma, and during this time the doctors gave her no chance of survival.  She was diagnosed with Acute Disseminated Encephalomyelitis (ADEM).  Despite her chances, thanks to many prayers and effective medicine, Rylie did survive.

When she did finally come out of the coma, she was unable to sit up, crawl, walk, talk, or eat. She has been through extensive therapies (OT, PT, and speech) for several years, to help her regain her baseline skills.

 

Since then, every time she gets exposed to a viral illness, she begins to decline.  Typically, it starts off with speech, motor, and processing regression.  She is unable to recall words like shoes, house, cup, etc.  She doesn’t remember how to do simple things like open doors or zip her clothes.  She falls down, runs into doors and walls, her legs will literally quit working and will often free-fall.  She also begins to become extremely impulsive, agitated, and eventually aggressive. 

Until November of 2019, Rylie was being treated under the diagnosis of Autoimmune Encephalitis.  Rylie had been to the Mayo Clinic twice, Boston Children’s Hospital, and to a world-renowned Neurologist in Dallas.  Unfortunately, none of these physicians had ever had a case like Rylie’s.

 

Just recently, doctors were able to confirmed her diagnosis as MOG Antibody Disease/Autoimmune Encephalomyelitis.
This is a new test, only available in the U.S. for about the past two years.

What this means is that every time she is exposed to a virus, her white blood cells attach to and attack the nerves in her brain and spinal cord instead of the virus.  Basically, her immune system malfunctions, causing antibodies to attack the nerves and causes inflammation in her brain, in particular.

 

 

Her neuropsychologist describes it like this: imagine an electrical cord and the plastic that covers it. The nerves in the brain are the electrical current and the myelin sheath is the plastic covering. MOG antibodies attack the myelin sheath, which lets the electrical signals out without any sense of direction.

In order to suppress her over-active immune system, she is currently on a daily treatment of 2 types of oral chemotherapy.  She also gets monthly, 3-day infusions of high dose IV steroids. She is often tired and nauseous, she’s had shingles because of her compromised immune system, and has had to miss a great deal of school. 

She also has a diagnosis of Amplified Pain Syndrome.  Many people with neurological conditions will have this condition; the brain misfires, telling the nerves something is wrong when there is actually nothing physiologically wrong.  Many days, Rylie is functioning at a level 8 or 9 pain, especially in her back, knees, and ankles.  Most of time she will never mention this and just go on.

 

Because MOG-AD is such a new diagnosis, Rylie is still a bit of a mystery.  Doctors here in Kansas City are still working to find the best plan for her, and in September she will be going to Children’s Hospital of Philadelphia to meet with the leading MOG-AD researcher in the US.    

 

Rylie
Rylie

Through all of this she has remained incredibly kind, positive, and hopeful.  She has maintained good grades and pushed through her adversity to be the best version of herself she can be.  She is an amazing kid, and I’m so proud to be her mom!

By Christi Brown

8 thoughts on “Rylie’s Story”

  1. What an amazing young woman! I pray they find a good plan to keep Rylie stable and ward off future attacks. Hang in there!!

  2. You always grab my heart when you speak of Rylie!! I pray for strength, answers and continued positivity!! Thank you for sharing your story, opening your lives and letting us love on you!!

  3. I can attest that she is one of the sweetest people I have ever had the honor to know. She never complains about feeling bad. She is so kind and one of the most Beautiful people I have ever met, inside and out. Her smile lights up whole room. I don’t know how her mom does it some days. And she has an awesome little brother. Christy you have done an amazing job with your children

  4. This is awesome I am so glad you decided to write about Riley and her Incredible life story she is an awesome young lady and I am so glad I am her second grandma I love her and I wish her well thank you again and I think God for giving you the insight to write about this beautiful young lady your daughter Riley!MARSHA

  5. What an incredible story and an amazingly beautiful young lady. You are an awesome mother with so much strength and courage. My prayers are with Rylie and you. Praying for healing, restoration and guidance for a plan that will meet her needs.
    Thank you for sharing her story and journey.

  6. I know firsthand how amazing the young woman in this post is, as well as her mother, brother, extended family and community. Rylie is the epitome of strength and resilience and I am proud to have done something good for her in any small way.

  7. Rylie is one of the most loving young lady, she is my heart. She is so strong, a beautiful girl inside and out. Love you rylie

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