Phyllis

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About me

Gender Female
Industry Non-Profit
Occupation social work
Location Philadelphia, Pennsylvania, United States
Introduction I am Phyllis, mother of Libby, Nathan & Bennett. My husband Mark and I went through several years of infertility and eventually were able to adopt our 8 year old daughter, Libby. When Libby was almost two we became pregnant with Nathan born in 2005 followed by Bennett born in 2008. Both Nathan & Bennett were born 8 weeks premature and both have been diagnosed with a rare progeriod syndrome called Mandibuloacral Dysplasia (MAD) which is a form of progeria. Progeria is typically spontaneous; however, MAD is a result of a gene change from each parent. Unbeknownst to us we had a 25% chance of having a child with Progeria-MAD with each pregnancy. MAD is progressive and results in a shortened life span. Although there are approximately 50 children with classic progeria worldwide there are only two other individuals known to have the form of MAD that Nathan and Bennett have. Nathan and Bennett's symptoms include skeletal dysplasia, joint contractures, extremely small stature, lack of weight gain, dysmorphic facial features and developmental delays. This blog has become my diary of the day to day struggles of raising our children.