Curran Family Website
We are a Catholic homeschooling family with three boys. Two of our children have Shwachman-Diamond Syndrome and secondary Mitochondrial Disease which has prompted us to be active in raising awareness of these diseases. Along with raising money for research and education of Shwachman-Diamond Syndrome, we are active in helping Shwachman-Diamond America with every aspect of its mission. We have also written articles and books on topics relating to Shwachman-Diamond Syndrome and coping with chronic illness. It is our hope that through sharing our experiences of living with Shwachman-Diamond Syndrome and Mitochondrial Disease, we can help other families. Our children have many medical problems, so we also support the United Mitochondrial Disease Foundation, Immune Deficiency Foundation and the Pull-Thru Network.
What is Shwachman-Diamond Syndrome?
The pancreas fails to produce the enzymes essential to digest food properly. Because of the exocrine pancreatic dysfunction (malabsorption), the child does not absorb enough nutrients, most commonly the fat-soluble vitamins, to grow and develop normally. Oral enzyme replacement therapy helps these children to digest their food, but many still need to take special vitamin supplements. Improving nutritional status does not necessarily improve the growth of children with Shwachman-Diamond Syndrome.
The bone marrow, where blood cells are produced, is also affected in Shwachman-Diamond Syndrome. White blood cells, which fight infection, are most commonly affected. Neutropenia is the most common hematological abnormality in Shwachman-Diamond Syndrome, though all blood cell lines may be affected. Anemia and blood clotting problems are also common in Shwachman-Diamond Syndrome patients. Because of the bone marrow dysfunction, these children are at a greater risk of developing life-threatening infections. Shwachman-Diamond Syndrome is considered to be a bone marrow failure syndrome, because up to 30% of these children will develop leukemia or aplastic anemia.
Sean and Joseph with their dad.
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