NeaLee Grace is 31 mo. old. Her birthday is 4-11-00. She has 3 sisters. Hayli is 6 and her twin sisters, McKinzee and Sidnee are 15 mos.

NeaLee was clinically diagnosed on Friday, November 22, 2002 (even though we knew after seeing pictures on the internet this is what she had) at Ft. Worth's Cook's Genetics Center. We first suspected NeaLee had WS at an appointment with a cardioligist after a sleep study showed signs of heart distress. The appointment actually turned out quite well because her supravalvular stenosis was very minor and had always been mistaken as a murmur since birth. But, upon seeing NeaLee, he noticed numerous signs of WS -- such as the small facial features, wide spaced "vampire" teeth and strabismus in her eyes. He referred us to a geneticist for the FISH testing.

As soon as I got home and could look up info on WS, I was in tears. All the worrying I had done because I felt something just wasn't right and everyone telling me nothing is wrong with her over and over, here it was right in front of my face. These children looked more like NeaLee than her own siblings or father and I. The more I read, the more I realized this was not something she was going to get over. She went from a "normal" but small child with delayed everything to an actual diagnosis. Part of me was somewhat relieved inside. I could finally tell everyone it wasn't all in my mind and I didn't just need to feed her more. She had WS.

Still, after reading all the info I could fill my head with, how would I help her to improve on her strengths and focus less on her weaknesses. NeaLee, like most children with WS, is a social butterfly. Everyone who just glances at her passing by tells us what an angelic face she has. There is no one who is a stranger -- just ask our UPS man or Schwan's guy.

She is a special little angel. NeaLee's strength is her willingness to please me. To just eat with her fork or wipe her mouth are triumphs -- leading to the whole family cheering and singing.

NeaLee's hugs are like none other. I am a mother of four girls and her hugs and kisses are so filled with love you can just feel it. It's not just a small peck. It is a tight squeeze around your entire heart.

NeaLee is so compassionate and empathetic for other people, too. If she sees someone crying or upset, she will run to them and embrace their cheeks in her tiny hands. A "Mother Teresa" of sorts, she could make the sickest person feel warm and brighter.

NeaLee's favorite things are singing her ABC's and counting to 20, Old McDonald and Twinkle Twinkle Little Star (It's so unfortunate that not everyone can hear her. It puts Celine Dion to shame.), Dora, Barney and Elmo, her kitty-cats -- Dribbles and Oreo, her puppy -- Kipper, & pretty much everything. She loves everything and everybody.

I am not even going to talk about NeaLee's "weaknesses" because, to us, it doesn't matter. She has brought so much joy to everyone who knows her. What more could you ask for? God may have not given her the brains of Einstein, but she has something far more special. She is the innocence we all wish we still had -- from seeing people for all that is good in them when even they don't, to never giving up, day after day, working on buttoning her shirt just to please her mommy and daddy. That one smile from us is all the encouragement she needs. I truly believe this is how God meant for children to live -- just happy.

A shining star on a cold dark night.

How does she tuck those wings in so tight?

Bright blue eyes, an angelic face, this gift grom God we'll name NeaLee Grace.

From heaven above she must have snuck by.

She's ever so cute, but my goodness how sly.

And how did she know that she truly was needed and how to God she must have begged and pleaded.

For reason's to us we may never know, he let her stay here instead of calling her home.

But, no doubt in my mind, when its raining and hailing, God's crying real tears and St. Peter's wailing.

For how truly boring in heaven it must be, 'cause we've got the angel we now call NeaLee.

I pray with all the parents of children with WS, please spread the word. There is still so much unknown about WS. Many doctors in my area had never heard of it. To some children, because of the heart defects and other defects caused from the lack of elastin, it is life threatening. So tell people about it. Educate doctors and nursing staff so no parent has to find out when it's too late.

Email our family at: Hensonfam4@yahoo.com.