"The Beginning of Our Walk"

This week we just found out that our 4 month old baby girl Emmalee Grace Contreras has been diagnosed with a chromosome problem, now titled "1p36 deletion syndrome". 1p36 deletion syndrome (also known as monosomy 1p36) is a congenital genetic disorder characterized by moderate to severeintellectual disability, delayed growth, hypotonia, seizures, limited speech ability, malformations, hearing and vision impairment, and distinct facial features. The symptoms may vary, depending on the exact location of the chromosomal deletion.^[1]
The condition is caused by a genetic deletion (loss of a segment of DNA) on the outermost band on the short arm (p) of chromosome 1. It is one of the most common deletion syndromes. It is estimated that the syndrome occurs in one in every 5,000 to 10,000 births. Knowledge of the disorder has increased a great deal over the last decade, mainly because more patients have been accurately diagnosed and described in international medical literature.

We "freaked out" and are still partially in shock.

Today, we are working together with our genetics doctor. She is walking us through this process and has asked us to help her start a support group for families that find themselves in our same "pickle". Shirley has been diligently researching the web for the last few days looking for any and everything she can find on the subject (1p36). She is now walking me through her findings (boy is it hard). I am taking it slow trusting in GOD that I may smoothly transition into my new found role as a father with a child of special needs. Oh, boy! never thought I was ever going to be saying that, but praise GOD. Though difficult, in the midst of my swallowed tears, confusion and question; I humbly raise up my head in gratitude and appreciation for the blessing that is Emmalee GRACE (whose name means the seal of creation and the unconditional, undeserving and unending love of GOD.

Please keep us in your prayers.

The Parents of EMMALEE GRACE

Amen!