"I believe a cure is possible and we will eliminate the challenges of MPS. Join us to make this a reality for Maci Grace Eickman and all children living with MPS"

Maci Grace Eickman

Maci Grace was the light of our world. She fought so hard in her short life, and showed all of us courage, hope, and strength fighting through MPS I.
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Maci's Story

Maci was a happy, funny 14 month old when we received the devastating news that she had MPS-I. Within 3 months of diagnosis she had her bone marrow transplant. She overall did well with the BMT, but had moderate GVHD of the skin. The physicians suggested photopharesis therapy to help alleviate the GVHD. This treatment actually worked quickly, and we were able to wean her off the steroids. On July 27, 2017 Maci went into the hospital with a fever, and soon after her getting emergently intubated in ICU we learned that she had a line infection and was in septic shock. We were told that she was not going to make it through the night… they were wrong. She fought so hard. She spent over 30 days intubated on the ventilator, and once extubated we were admitted for another 2 months. We finally went home, and a month after being home she began requiring platelet and blood transfusions. We were told that this a rare complication of the BMT, but not to worry because it will resolve itself. She fought so hard and had over 100 blood transfusions in a 4 month period. We were admitted at the end of April and blood became scarce for Maci. She was given almost 100mg of steroids to hold her over until more blood could arrive… during this time she declined quickly. Her blood pressure sky-rocketed for hours, and eventually she couldn’t hang on anymore. Maci passed away on April 29th, 2018 in our arms. This little girl was our everything and even though she was only with us for 2.5 years, she showed us what true love and happiness was. She absolutely loved Sesame Street and she had the funniest personality. Even though we will never begin to understand why this has happened, we know that by telling her story can make a difference and promote awareness for MPS.

Messages in Maci's Guestbook

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  • Diane

    Today I wear my orange ribbon....your favorite color and Ernie's. I cherish your precious memories we were blessed with during your 21\2 years with us. Forever in our hearts. Love and miss you Maci girl.
  • Sean

    Maci was a wonderful ray of sunshine! Always smiling and in great spirits with an infectious laugh. Especially when in the company of Elmo!! My favorite picture of her was when she went to Trick or Treat as Oscar the Grouch.
  • Diane

    Happy birthday Maci girl.
  • Diane

    Maci left us knowing she was so loved and that her parents took such good care of her; she felt their love. Miss you Maci girl. Hoping for a cure.
  • Jan

    What I learned from Maci is that little children possess determination and strength. She mimicked her parents’ personality. Maci worked through many adversities, her light was bright, and she made a difference. At the end of the day, that what we should all strive for to make a difference of our time on earth. ♥️
  • Joni

    Maci truly did teach everyone she came into contact with how to love even more than you thought. She fought from day 1 of her sweet but short life; but she was still the happiest little girl. It seemed to be one thing after another for Maci but she always took everything in stride. She loved Sesame Street more than anyone I have ever known. Her little laugh was contagious. Maci taught us all so much, like not to take anything for granted, be thankful for every single thing you are given in this life, Dont sweat the small stuff. And to love with everything you have. Maci Gracie you are greatly missed my sweet little friend. We love you and thank you for all your teachings.
  • Jessica Grilliot

    We love and miss our spunky little Maci ❤️❤️

  • Diane

    Maci left an everlasting impression with everyone she met. Maci had a beautiful personality and wonderful spirit. She loved sesame street, books, puzzles, stickers but most of all Maci loved her parents and her parents loved her unconditionally. The love and bond between them was so strong and evident. Maci is truly a Superhero who fought MPS1 with such courage, hope and strength. Maci Grace is an inspiration to many but mostly to those who are fighting this disease. Loved by many - forever in our hearts
  • Elizabeth Eickman

    Today we had "Maci Day" at work.... my employees decided to celebrate your life and love for Ernie by wearing their "Miles for Maci" and Ernie shirts. Even though its it's been almost a year since I held you, you are still so loved and will never be forgotten.

  • Kathy Monnin

    Although my family was never able to meet Maci, we shared in her life through her Mom who shared many photos and videos of Maci. She was a very beautiful, lively, and determined girl. Her love of Elmo, Curious George, and Oscar the Grouch will live forever in our hearts - her laugh and life were a blessing to many! We miss her!!
  • Elizabeth Eickman

    Happy 3rd birthday Maci Grace.
  • Elizabeth

    10 weeks from today our baby took her last breath. Words cannot describe our heartache and sadness not having her with us. Everyday seems harder than the one before. We miss her so much.

  • Lexi Steineman

    Maci was one of the sweetest, most funniest children I have ever had the pleasure of knowing and spending time with. No matter what the obstacle, she fought so hard to get past it, and kept that same spunky, sassy attitude she had since the day I met her. I always remember her saying ‘uh oh’ followed with a laugh at the most random times, especially when it was nap time and she was supposed to be asleep, lol. She was one amazing, brave, and courageous little soul.
  • Moneta

    I absolutely loved getting pictures and videos of Maci from her parents. She had the cutest and most uplifting laugh. She would say the funniest things. I am going to miss her beautiful smile. I think of her often and quickly when I see Elmo from sesame street. Miss you maci.
  • Brenden

    She was my favorite cousin and definitly the fighting laughing joyful star of our family we will always love and miss her
  • Autumn

    Maci was one of a kind. I loved getting updates about her and hearing about her spunky attitude. Ill never forget meeting her for the first time and watching her and Willow fight over toys because both wanted what the other had, typical only children! Her fight lives on in the hearts of everyone who knew her, especially her parents who I love very much. In honor of Maci, I have started the process to become a marrow donor and will be donating blood on a regular basis. I am constantly sending comforting thoughts to J & L and hope that they are doing "Okay".

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