No. Really. I swear I'm going to, at some point get to "Too Hot! Part II". But this is something I felt the desire to share. Since it's my blog, I'll do what I want; and this is it.
So imagine two pretty normal people. Good looking. Mid to late 20's. Married. Unfortunately from Michigan, and fans of Michigan state. No one's perfect. They love missionaries (especially ones like me who were really cool) and they are great cooks. They have two kids. Two beautiful, wonderful, special kids. One of those kids is a little girl. She has it pretty rough. I want to take a minute to use my blog as a vehicle (8 passenger apparently) to share a little bit about the challenges this girl, and in turn, her awesome parents, have to face.
I would like to add that I've met this family, and they're not one of those, "Pay attention to me! My life is hard!" parents. They're good people actively involved in good causes, but they keep a low profile and have hearts of Gold. Let them tell you about Brynn Hileman, their daughter.
My husband and I always knew we wanted to be parents when we were married. On November 15, 2006, we were blessed with an angel from above. Brynn Peyton Hileman.
Brynn has brought so much joy to our lives and is the most amazing child. If you are having a down day, she will always make you smile.
Brynn was a little late at doing most things as an infant. She rolled over late, sat up late, and crawled late. We knew something was wrong, but couldn't figure out exactly what. This was when Brynn was 14 months old. Her pediatrician said if she is not walking by the time she is 2, we will refer you to Neurology.
So her 2nd birthday was here and she still was not walking. We then go to the neurologist who refers us to the Developmental Clinic to test for autism. The results are that she does not have autism, but suspect that she may have Rett Syndrome.
We then proceed to see the neurologist on April 27, 2009, where it was confirmed that Brynn does have MECP2 mutation that is consistent with Rett Syndrome.
We now know what is wrong with our sweet little angel from above and are very blessed to know about Rett Syndrome. Brynn teaches us a little about her world and we teach her a little about ours. She may not be able to walk or talk, but we are NEVER going to give up. We joined GP2C for support and to raise awareness about Rett Syndrome. We hold a 5k annually in honor of Brynn to raise awareness and funds for our cure! If you see our sweet little angel with a SMILE on her face, Smile back. It's just Brynn's way of saying "Hello".
http://girls.girlpower2cure.org/brynn
For those of us who don't know what exactly Rhett Syndrom is, please follow this link.
http://www.girlpower2cure.org/who-we-are/rett-syndrome.aspx
I would also note that they have a wonderful son who also has face many challenges. One kid with a lot of needs is one thing. Two? That's your ticket to sainthood.
Again, I wish I could do justice about telling about the Hilemans, but they are world class. They have handled the challenges presented to them with such grace and power. It's truly a miracle.
