About


P.O. Box 18144 River Rouge MI 48218
Madison Holland is a 12-year-old girl who was diagnosed with sickle-cell disease at birth. She has had pain episodes and hospital emergency room visits with over night stays since she was two years old. In 2008 the clinic she visits for treatment began a study for children to measure the results of children getting blood transfusions vs those taking the drug hydroxyurea and those just being monitored with TCD (trans cranial doppler) exams and MRI’s. We tried to enter the study, but Madi didn’t qualify for the study because her TCD reading was too high. There is a blockage in one of the blood vessels going to her brain resulting in high velocity blood flow to that area and silent infarct stroke. Her hematologist told me she could see small lesions on her brain. So, the good part is, because of the tests we know first that Madi has at some point had a silent infarct stroke. And second, she is at risk of having another one.

So, there we began our TCD and MRI regimen. Every six months she had an MRI and every six months she had a TCD exam plus her regular quarterly check ups. Being a single mom, I became stressed. I worked in the automotive industry in a manufacturing plant which was very demanding and unsympathetic to what I was facing. Being let go from that position was a welcome relief for that reason.

When her doctor told me the plan of action, she said, “Madison will have to begin having blood transfusions every two weeks.” I said, “For how long?” She said, “For ever” like she was telling me to go fill a prescription. I’m still heart-broken. I don’t want to plan the rest of my life around blood transfusions and I don’t want her to either. I want her to have a long healthy life that includes college, marriage and children.

Thus, The Madison Holland Foundation was born. We will raise money to help find a cure for sickle-cell and we will solicit the social work and medical community to advocate for our adult patients to be treated with dignity and respect when seeking help in emergency rooms. That’s it. That’s all I want.

10 Comments on “About”

  1. satsumaart Says:

    I’m very moved by your story. Thank you for sharing, blogging, and doing this work for Madison and others.

    Reply

  2. Dominique Friend Says:

    I wish you great success, please let me know how I can help!!

    Reply

  3. poeticjourney Says:

    Very beautiful little one, ty for sharing your moving story. God Bless U! You making a difference for us SC patients out there. 🙂

    Reply

  4. beebeesworld Says:

    Helen: I found your site through a reblog from another wordpress friend. I lost a 15 year old son very suddenly and found out that he had viral myocarditis, didn’t know he was sick , and collapsed while playing ball-the medical examiner said it was the stress on his sick heart that took him, We also found out he had an undiscovered bicuspid valve/ I found a great organization that supports education a prevention of the deaths of young athletes from sudden heart issues-Ive said all of this to ask you- how did you start the foundation for Madison? Would you mind sharing with me? I hope to read more of your story. If you would consider telling me how you started the foundation, or would like to communicate more privately ,my email is mtngrl752000@yahoo.com/ Thank you for sharing your story, I plan to read the rest of your blog on Madison right now. beebeesworld

    Reply

    • Rena Says:

      I’m so sorry to hear that. There is nothing like the loss of a child. There are no words of comfort. Only time can mend and ease the pain of that wound. I’m sorry this reply too so long.

      Reply

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