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FINDING JACK'S NEMO |
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| At two and a half years old, Jack Hagelin was
diagnosed with a very rare condition called Ectodermal Dysplasia (ED) with
NEMO (Nuclear Factor Kappa B Essential Modulator). NEMO is a very rare
primary immune deficiency that has affected fifteen known people world
wide. He and his family have traveled to many hospital facilities and
there are few doctors who know about this condition. There is no cure for
ED, however there is a cure for NEMO. By having a stem cell transplant
that will give Jack a new immune system. At this time Jack receives gamma globulin every twenty one days to help his immune system fight infection and this will be life-long without the stem cell transplant. Jack has had many symptoms that were misdiagnosed such as chronic diarrhea, lower extremity swelling with infections and malnutrition and dehydration all of which total to over three hundred days of hospital stay. From the many bouts of dehydration, Jack also suffered from a stroke, which is resolving with the help of blood thinners given by injection two times a day. Thankfully, there has been significant resolution of the stroke. Jack is a very strong willed child. Jack has already reached half of his lifetime insurance maximum and he is just three years old and that doesn't include the cost of the stem cell transplant. His medical issues make him uninsurable in a private market. Most people never reach these catastrophic levels of insurance benefits, so raising money may be the only way to afford his medical necessities. This has been a very trying three years, and this is a strong family that believes that LOVE is the best medicine.
Find out how to help Jack here. |
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