Emma's World: Please pray (and contribute!) to the cause

Tuesday, May 26, 2009

Please pray (and contribute!) to the cause

A dear friend of mine, Holly, who lives in Oklahoma, is trying to raise money to attend the microcephaly conference out here in California in June. Her youngest child, Rachel, has microcephaly and a brain malformation similar to Emma's, and they really want to make it to this conference for many many reasons.

Please visit Holly's blog for more details. I just wanted to post about their plight and appeal to the people who visit Emma to donate to the trip fund if possible. Even if you can't donate, please pray. Their family is struggling with several different health issues right now, and she has EIGHT children! :)

1 comment:

holly said...: Oh Joann!!! Thank you....I keep forgetting to come to this blog. I always go to the other one...you know, the one you never update. :) I am changing my link right now...I am soooo sorry I never saw this and thanked you when you made it.; June 5, 2009 at 3:50 PM

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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.