February 16, 2012

The New Miracle

It's official!!!! They've STARTED!!! 

Shortly after Reid was born we discovered that a pharmaceutical company was in the process of developing a drug that can (fingers crossed...toes too!) help patients with achondroplasia.  We have been reading, and reading, and reading waiting on the announcement that they have started.  That day has finally come and here is the article!  I'm still wanting them to update the pipeline, but I'm sure that will come soon.  Right now everything is in phase one.  Phase two, which will involve pediatrics, should hopefully begin around October 2012.  Our geneticist at Johns Hopkins informed us that she has been asked to participate in the clinical trials.  I'm hoping and praying that she deems it "safe" and that she participates.  Rico and I would heavily consider allowing Reid to be a part of the clinical trials. She along with other specialists at Hopkins are pretty amazing.  BioMarin explains that the peptide that has been developed will hopefully be able to "counteract the effects caused by the activating FGFR3 mutation."  Read about it here! :)  I'm hoping that it can do what it's done in animal models and that it will mean less surgeries and procedures for kiddos like Reid. 

When we found out that Reid would be born with some form of skeletal dysplasia I told Spencer and Briggs that I would ALWAYS pray for a miracle, no matter what!!! At that time I was praying for a miracle that, number one, Reid would LIVE, and number two, that he would be born without any form of skeletal dysplasia.  I told the boys that I would never stop praying for a miracle for our baby and that if he was born with skeletal dysplasia, I would find our new miracle to pray for.  I pray all kinds of things over Reid.  I pray that he will be healthy and have few complications that can sometimes be associated with achondroplasia.  I pray that he will be happy as he goes through life.  I pray that he has an infectious personality that people can't get enough of and they just want to be around him all the time.  I pray that he's outgoing and never meets a stranger.  But, mostly at this stage in our lives I pray for our new miracle.  I pray that BioMarin's clinical trials will be successful and that this peptide will come through for Reid and so many more PRECIOUS children with achondroplasia.

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