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ADEM Recovery Looks Like This

Article posted on Monday, May, 2nd, 2011 at 10:20 pm

Not long ago, I received a call from a Mom looking for answers.  Her name is Holly, although we talked for almost an hour over the phone before I even knew her name.  I heard myself in her voice as she told me about her sweet little girl, Marisa, and within minutes felt as if I’d known her for years.

My heart broke as she shared her fears with me, the same fears I had faced a little over a year ago.  Many questions and few answers.  Marisa was fighting to survive and Holly was fighting to give her everything she needed to do it.  Those are the times, for me, when it is most difficult to share Neely’s story.  When the person hearing it so desperately needs a miracle

After 7 long weeks in the hospital, Marisa is home with her family and is making progress everyday.  She still has a long road ahead of her and she still needs our prayers.  Marisa’s Mom is going to write her story in her own words and has given me permission to publish it here when she does.  As you can imagine, she has her hands full right now, but I didn’t want to lose this opportunity to ask you to keep her in your prayers and to know enough about her story to keep her in your thoughts too.

Holly wrote this shorter version of Marisa’s story for a fundraiser that was held locally by HOP (Helping Other People) and I didn’t think she would mind me sharing it here temporarily. (See below) When I think of Marisa, my mind always go back to one particular video where she is taking some very difficult steps (literally) toward recovery and into the arms of her Mom.  I hope it inspires you as much as it does me.  Steps of Recovery from ADEM

 

Marisa’s Story (A short excerpt) In Holly’s words:

My name is Holly and my family consists of my husband Brad and our children, Marco (3 ½) and Marisa (2.) Marisa was born on January 2, 2009 and quickly grew into a sweet, loving, affectionate, independent, precocious, fearless and strong child. She warmed up any room because she was always happy and cheerful. She loved to give kisses and say, “I love you!” to pretty much everyone she knew.
I took Marisa to her 2 year well-baby check up in early January 2011 and her doctor had absolutely no concerns for Marisa’s health. She was a perfectly healthy child except for an occasional cold or ear infection. On January 31st, 2011, Marisa developed a fever of 103.6 and began vomiting. She continued to vomit and I took her to urgent care and her pediatrician 4 times over 9 days. Everyone told us she had a virus. I took her to the ER on February 10th and we were there all day while they ran tests. Everything came back negative including a head CT scan. The doctor said she had a viral infection and sent us home.

I took Marisa back to the ER the next day because she continued to vomit and began to grind her teeth.  I was almost hysterical and the ER took us to the front of the line. The ER doctor began running more tests. He eventually did a “lumbar puncture” which was abnormal. He thought she had meningitis or encephalitis or both. He immediately started her on IV antibiotics and we were admitted to the hospital.

We spent 5 days in the hospital while the doctors tried to figure out what was going on with Marisa. We were told possibly viral meningitis, bacterial meningitis, appendix rupture and eventually encephalitis. Marisa continued to deteriorate and on February 15th began to show signs of seizure activity. About 5pm Marisa began having a seizure that lasted 45 minutes. Her nurses issued a “rapid response” call throughout the hospital that signals an emergency situation. Several doctors and nurses rushed to her room and took her to the Pediatric ICU (PICU.) They put her on a respirator and essentially put her into a coma to stop the seizure.

Marisa had her first MRI on February 16th and she was diagnosed with Acute Disseminated Encephalomyelitis (ADEM.) ADEM is an auto-immune disorder of the brain and spinal cord. Marisa’s doctors explained to us that Marisa got a virus which confused her immune system and caused her immune system to begin attacking the tissues of her brain and eventually, her spinal cord. The infectious disease doctor did numerous tests to determine which virus caused this, but it was gone by the time Marisa was tested.

Marisa slept until February 23rd, when she opened her eyes for the first time in 8 days. She came off the ventilator on March 1st.  She was moved out of the PICU to the rehabilitation unit on March 11th. Marisa was put back on seizure medication on March 15th and will probably stay on this medication for a year or more.

We now know from Marisa’s MRIs that she is a very fortunate girl. Her MRI on March 4th showed she had significant inflammation and demyelination of the white matter in her brain and some demyelination of her spinal cord. She had significant deterioration of her deep brain structures and her cerebral cortex. The good news is that Marisa’s doctors did a follow-up MRI on March 17th which shows us that her brain is healing. Marisa is lucky that most of the deterioration of her brain is reversible. However, she has a long road ahead of her. Her doctors expect it could take up to two years before Marisa is completely healed. Marisa’s doctors have warned us that Marisa could have some permanent disabilities, but of course, our family plans to work with her and we expect her to make a complete recovery.

The outpouring of support, love, prayers and help from so many people in our area and other parts of the country has been amazing. It has helped us through the worst time of our life. Our family feels so loved and we appreciate everything that everyone has done for us. (Source: Helping Other People, H.O.P.  APRIL 2011 NEWSLETTER)

 

3 comments

  • This story sends shivers down my spine, my heart pours out to you. On January 26th, 2011 my 2 year old daughter went from having a “virus” to unconscious in the PICU for 3 days, when she awoke she could not eat, talk, walk, or even make eye contact. She was diagnosed with ADEM after two days and it has been a long road. We have been home since 3/11/2011 and she continues to improve weekly. She has a small limp, and some fine and gross motor problems with her right hand, but otherwise has mostly recovered! We still struggle every day to cope with all that has happened daily. I wish your daughter the best from the bottom of my heart

  • Bless you little Marissa that your life may be full and prosperous and that your family continues to feel loved and supported by those close to you. It is so heartwarming to read about the loving responses of those around. Unfortunately, it takes something like this to bring out the best in us but I do believe that God is right here with us in the misery to heal and transform us.

    God bless

  • Hello! god bless your Kids u hope the are doing Well so far! My have diagnozed with ADEM lást saturday¡ Thanks to your blog i fell a little hope My baby still sleeping! She is My Sleeping Beauty! We are from México, but Thanks to You An all the information You write we know our long way to go!
    Bless You All!
    Tania

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