Maddie's Marathon: Day Of Hope Marrow Registry and Blood Drive Today with Surprise Guest!

Monday, February 24, 2014

Day Of Hope Marrow Registry and Blood Drive Today with Surprise Guest!

Please come out to our Day Of Hope bone marrow registry and blood drive TODAY at CGCC pecos campus from 9am-1pm. There will be music, Molly the Marrow Monkey, booths set up for volunteer and community service hours options from Be The Match, United Blood Service, and HopeKids. Today we are going to have a very special guest, and new friend to the Johnson family; JOHNJAY from the Johnjay and Rich morning show on 104.7 KISS FM, take the time from his incredibly busy schedule to come out and donate his blood and register to be in the bone marrow registry!!! So please join us and be a part of these great acts of kindness!!!

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Maddie's Story

When I went into pre-term labor at 35 weeks, I was very concerned. At the hospital we were told that Maddie was in distress and we had to do an immediate C-section; I was at panic's edge. So when she was born and I heard her little cries, I felt a sigh of relief. But that relief was very short-lived. With every passing hour my stress levels rose as she never came back to my room.

I was told that she was in the Neo-Natal intensive care unit (NICU) because her white blood count was severely low (neutropenia) and she was at risk of infection. My first time seeing my little Angel was behind glass as her daddy pointed her out to me. A day passed before I got to hold her in the NICU. We had just found out that she had an enlarged heart and some anomalies in her organ structure. She had a low red blood cell count, but this didn't concern the doctor much. She stayed in the NICU for 2 weeks, even though I had been discharge the week before.

The third week she went home, but we had to rush her right back to the hospital the next day because she was extremely pale and not eating well. She was admitted to the Pediatric Hematology/Oncology unit. We were told that she needs a blood transfusion because her red blood cell count was severely low.

Later that day they performed a bone marrow biopsy and had run some blood tests because her hemoglobin drop could only be of two reasons. She either has a rare disease in which her bone marrow isn't producing red blood cells or she has the Parvovirus. One diagnosis is life threatening, and meant life-long transfusions with iron-chelation therapies and the other meant 10 days of antibiotics. A diagnosis of her only cure being a bone-marrow transplant, while the other cured in days.

Shortly, we found out that Madison had the diagnosis we had hoped she didn't have. Madison was diagnosed with Diamond Blackfan Anemia at three weeks of age. This meant that her bone marrow was not producing any red blood cells and she would have to endure transfusions for the rest of her life. With numerous transfusions come different complications, one of them being Iron Overload which is a secondary disease to her bone marrow failure. Because the iron cannot be separated from a donor's blood prior to transfusion, this causes iron in transfusion dependent patients to rise to very dangerous toxic levels. If the stored iron is not extracted (via chelation therapy), then the iron will cause organs to fail.

Associated with "Maddie's Syndrome" are other deficiencies such as a fracture to the immune system and an unknown immune-deficiency which requires monthly IVIG infusions, a variation of vasculitis and seizure activity which also require their own treatment protocol and then there is still her white cell issue that is not associated with her DBA, but is to her genetic component. We treat her neutropenia by administering a injections three times a week.

Since birth, Maddie has spent half of her life in hospitals, inpatient, outpatient, ERs, treatment centers and have had many procedures.

In the year 2011, doctors told us that Maddie's marrow appears to be worsening and we may be looking at a total bone marrow failure. They want us to consider a bone marrow transplant, but we have been searching for a bone marrow match for a little over six years, and to our dismay, we are still unsuccessful.

Our goal is to share Maddie's journey and our hope is to reach as many people as we can and to impress the importance of blood donations and joining the bone marrow registry!

"We Will Win This Race"

Links to Maddie

Monday, February 24, 2014

Day Of Hope Marrow Registry and Blood Drive Today with Surprise Guest!

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