madison |
our connection? madison has a rare genetic disease called Mucolipidosis Type II, also referred to as I-Cell disease. this is a lysosmal disease that affects her enzymes. april told me that early on madison was actually tested for Down syndrome, and after that test came back negative, no other testing was done. i believe it was after she began missing some developmental milestones that much further testing was done, and they eventually discovered that madison has mucolipidosis type ii. april and shane were told that madison's life expectancy is 3-8 years. one statement that april made to me was "i only wish that she had Down syndrome....." that puts things into perspective, doesn't it?
april and shane have recently started attending our church, and i am loving getting to know them better. april is MUCH younger than me, but her faith is AMAZING! she has such peace, that only comes from completely trusting our Lord and Savior, Jesus Christ! and madison lights up a room! everyone at church is drawn to her, as they are drawn to wyatt as well! she has a little walker that she can scoot around in...you should see her go! she is just precious!
this week april and her parents are in birmingham for madison's 6 month checkups; shane stays home to run their family business. i wanted to share something april said yesterday in her blog, the life of riley: "I can honestly say that this is the first time that I have not been anxious and sick over these appointments. I was earlier in the week but I knew I could not keep stressing about this. I have laid all my worries and anxieties at the Lord's feet. This situation is out of my control and in his. Please keep our sweet Madison in your prayers this week." so i join april in asking that you pray for madison this week. there are a lot of appointments with many specialists...their days are long and exhausting. pray for good rest for them all, and good reports from the specialists. pray for april and her parents as they care for madison out of their home environment. and go visit april's blog.....you'll really enjoy getting to know them better, and you'll see LOTS of cute pictures of precious madison! peace....
Praying! Beautiful little girl and sounds like a wonderful family.
ReplyDeleteShe is a doll! I love her grin!!
ReplyDeleteI know what it feels like, i have a 21 month old daughter that has the excat same disorder
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