Emma's World: Melanie's Birthday Party Giveaway!

Saturday, April 18, 2009

Melanie's Birthday Party Giveaway!

Melanie, of "Better Than Normal" (mommy to that amazing boy, Daniel), is having a contest....the prize is a Better Than Normal birthday party kit, which includes adorable, hand-made, felt crowns for the birthday child and 5 of their friends. Please visit her website for the rules of the contest and to see pictures of the crowns....they really are great! Any kid would love them!

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Purpose of this blog

My daughter, Emma Clarissa, is a beautiful, affectionate, sweet, brave, intelligent little girl who just happens to have multiple serious medical diagnoses.

This blog focuses on her triumphs, challenges and day-to-day life as she contends with both TAR Syndrome (Thrombocytopenia Absent Radii Syndrome, a rare condition which causes skeletal abnormalities and low platelet counts) and GLH Syndrome (aka cerebello-trigeminal-dermal dysplasia, an extremely rare disorder associated with a cerebellar malformation known as rhombencephalosynapsis).

In addition to these diagnoses (or in many cases, because of them), Emma also has microcephaly, global developmental delays, Failure to Thrive, GERD, asthma, and tone and mobility issues (e.g., cerebral palsy).

This blog also provides a place to post helpful links to sites with information on these conditions as well as online support groups. Support groups can be invaluable to parents of children with medical problems, who frequently feel isolated and/or need answers STAT!

WARNING: occasionally a post or comment may contain references to God, or offer thanks or praise to God. We acknowledge His hand in our lives and in Emma's, and thank Him for all He has done and is doing.