Tuesday, May 4, 2010

Matthew's Portrait Session - NC nilmdts photographer

updated 19 May 2010:
This might be the only opportunity I'll ever have to share photos from a session I've done with Now I Lay Me Down to Sleep. I met this little guy and his family about 6 months ago when his mother dropped him off for the first time in the nursery at church, and I've had the privilege to take care of him and pray for him at church lots of times since then.

Matthew spent a lot of his life at Duke. He was recently diagnosed with Adenylosuccinate Lyase Deficiency, ASLD, which took his life last week, at 11 months old. A couple weeks ago, he left Duke and went home with his family. I got to take photos of Matthew and his family at their home--before he went to his eternal home with our Lord, Jesus.

Matthew's parents are setting up a foundation in Matthew's honor to raise money for family support, research, testing, treatment and a cure. Here is some info from the Miracle of Matthew group on facebook:  

We are a soon to be non-profit organization created to help find a treatment and cure for the families who have children diagnosed with ASLD.

ALSD is a rare autosomal recessive genetic metabolic disorder with only 60 cases reported world wide, It was first documented in 1984, and the first US case was identified in 1996. Matthew is the 2nd case in the US. He was also the 1st case at Duke.

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