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ADEM Recovery Looks Like ThisArticle 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)