More of You God

Anna Grace is doing well. She is staying very healthy! Praise the Lord. We go to Texas Children's in March and again in April to run baseline tests for her heart, lungs, eyes, and some others. We are praying that we get results that shock the doctors! Every six months to a year we will have them done again to monitor any changes. Thank you for the continuous love, support and prayers.

A sweet friend, Nikki Crain, has offered to have a Scentsy party as a fundraiser for Anna Grace. Nikki has opened an online party that you can access from her website. Just click here and then click on "Prayer for Anna Grace" under open parties. Nikki has so graciously said that all proceeds from the party will go to Anna Grace. I am continuously overwhelmed by the love and support that has been given to our family.

God really spoke to me this morning during worship. He reminded me that no matter life's circumstances, "there is no place I would rather be than here in His love." Click here to go listen to the song, Set a Fire. Take a moment and meditate over the words:

There's No place I would rather be

There's No place I would rather be

There's No place I would rather be

Than here in Your love here in Your love

So Set a fire down in my soul

That I cant contain

that I cant control

Cause I want more of You God

I want more of You

I am so glad that I am always in God's love...wrapped in His arms....being held by my Sovereign Savior. There is truly no better place to be.

In my Bible reading the other day, these words really hit home to me.

I waited patiently for the LORD,

and He turned to me and heard my cry for help.

He brought me up from a desolate pit,

out of the muddy clay,

and set my feet on a rock,making my steps secure.

He put a new song in my mouth,

a hymn of praise to our God.

Many will see and fear

and put their trust in the LORD. (Psalm 40:1, 3)

I believe with all my heart that the Lord hears my every thought, sees my every tear, feels my every hurt. He has been and continues to refine me as I walk this unknown road with my precious family. I knew when I read these verses that He was putting a new song of praise in my heart. Now today, I know what song it is. It is a song about His love...of being in His love forever and always. I still have days that are hard, moments where I feel like I am back down in the pit. But it is in those moments that He lifts me back up and I am reminded of His unfailing love.

Oh, may my God be glorified in ALL things!

If there is someone out there that needs to talk, please know I am here for you. And, if there is anyone out there that does not know about Jesus and the love He has for you, please go read this. God loves you so much He sent His son to die on a cross for you. WOW! As a mother, I could not even fathom having to do this...God's love is more than we could ever imagine. Don't live your life without knowing it!

Overwhelmed with Love

As I reflect over our journey this year, I am overwhelmed by the love and support that has been given to my family. Thank you, thank you, thank you for the prayers, cards, encouragement, financial support and the special little things so many have done to make Anna Grace feel so loved and special.

We did hear back from the DNA test about two weeks ago and they confirmed that Anna Grace does have MSD. Although doctors had predicted that Anna Grace did have MSD, hearing the confirmation was very hard. I am grateful that I serve a God that is sovereign. He gives me strength and peace moment by moment.

Anna Grace is doing very well. She is healthy...other than a little cold that we are all battling right now. She has loved being around all her family during Christmas. Now that she is back home, she has been playing with all her Christmas presents. Just today, we have enjoyed this beautiful day that God has given us playing baseball, alligator golf, jumping on the inflatable jumpie and having a picnic. I just love the sweet family that God has given me.

Cherishing Every Moment,

Leigh Ann

Where Dreams Come True

(End of August) A 14 hour rode trip (with a three and five year old) was just the beginning of a vacation filled with memories that will last a lifetime. When we first heard that Anna Grace has a terminal disorder, Brad said that he wanted to take her to Disney World. Anna Grace absolutely loves Cinderella and he wanted to make sure that she was able to enjoy Disney at least once more before anything happened to her health or mobile abilities. Brad's brother got word of this and had us a trip planned before we knew it. It was a wonderful trip. Both of our parents were able to come and Brad's brother's family as well. It was the perfect trip! We had the best tour guide too (thanks Brian). The highlight of the trip was when Anna Grace was able to dance with Cinderella and Belle in their special autograph room. Since our party was so big, our family was the only family in the room. It was a very special moment. She had been wanting to dance with Cinderella since we started on the trip. Anna Grace and Makenzie both had a blast! Memories were made that will last forever.

Another special event happened while we were gone on our Disney trip. A family friend, Haylie Stafford Dufour and her sweet friend Christi Blair, planned a softball benefit tournament for Anna Grace. I am in awe of their generosity. They had never even met Anna Grace. Thank you to all who supported the tournament and those who played in it. We are truly grateful for your support.

Some days are better without mascara...

The past few days have been no mascara days for me. My heart is heavy and hurting. Anna Grace's OT and PT are concerned that she is regressing a little. They feel that some things Anna Grace used to be able to do are harder for her now. I can even sense this in Anna Grace's behavior. She is getting frustrated and fatigued more than usual. I feel helpless. I don't know how to help her. I cry out to God to give her peace that only He can give.

Please pray as we prepare to go see two doctors at Texas Children's in Houston. We go in about a week. The doctor that set up our appointment is from Italy and is a specialist/researcher in MSD. I truly feel God led me to him. After Anna Graces's diagnosis, I began looking for information online, but didn't have much luck. Since MLD is so rare, I began researching medical journals about MSD and would email the authors. One doctor I emailed responded to me that he did not know much about MSD but that his mom just happened to be visiting him and she told him that I needed to contact Dr. Ballabio in Italy. He is the doctor that actually identified the MSD gene. He sent me Dr. Ballabio's email and I emailed him. I received a response fairly quickly and he told me that he actually comes to Texas Children's in Houston every two or three months and would like to see Anna Grace. I got chills upon reading this. Finally, someone to give me some answers to my many questions about this monster called MSD. I look forward to meeting him and hearing his thoughts about Anna Grace.

Lord, thank you for carrying me when I am weak, for holding me when I am hurting and for comforting me with your peace always. I lift my eyes up, my help comes from the Lord. Even though I don't understand and I don't like this journey we are on, I WILL TRUST YOU. For with you all things are possible. You are Sovereign and you are Good!

Anna Grace turns 5

Thanks Kalli, Whitney and Michelle. The banner was perfect!

Anna Grace turned 5 August 2 (same birthday as her Maw Maw Ann). She had a very fun birthday party! Seeing the joy on her face was worth all the work. We had planned on having a puppy dog tea "pawty" but changed plans at the last minute. While surfing the internet, I ran across a rainbow birthday cake. At that point, I knew that would be the perfect party...a Rainbow party!! I asked Anna Grace if she wanted a tea party or a rainbow party and while waving her hands in the air in a arched motion, she said , "rainbow!" So, we planned a rainbow party for her and included some of her favorite things: tea party, play dough, miniature golf, and a rainbow art project using glue. It was a success.

It touched my heart seeing how much fun she had. I mainly invited family to the party. Anna Grace seems to thrive more in a small group, so I tried to keep the guest list smaller than normal. Anna Grace was full of life that day. She was running and laughing and just having a blast. Of course, she enjoyed showing off "Rainbow"-a Havanese puppy that she got for her birthday.

Rainbows mean so much to our family right now (to find out why see my first blog). We are clinging to the promises of our Savior. We are trusting him and his Word. Lord, I know you promise to never leave us nor forsake us. Thank you for holding, leading and loving us. We are trusting that with you "nothing shall be impossible" (Luke 1:37). No matter where our journey leads us, you are there and your light is guiding our way. I love you Lord!

Ok, time for some pics!

Run Anna Grace Run

I just loved this cake! So precious and delicious!

Paw Paw and Nana

Maw Maw and Papa

Our precious family (Brad, Anna Grace, Makenzie and me (Leigh Ann)

Uncle Jason and Anna Grace being silly

We were reading the story, "Noah's Ark." Do you know what is at the end of this story??? You got it, a RAINBOW

Special times with cousins Maggie and Emma

Mommy's little angel (Friends forever)

We were glad that Madison, Chloe, Aunt Patsy (and Uncle Jason & Tyler) came

First Day of Kindergarten

I cannot believe Anna Grace has started Kindergarten! Time really does fly by. This begins a new chapter of her life. I pray that Anna Grace will show God's love as she meets her new teachers and friends.

Anna Grace wasn't very excited about waking up so early...she likes to sleep late. But, she managed to get ready and even have time for an episode of her favorite cartoon, Curious George. Here are a few pics.

Ha ha, she was saying cheese!

Daddy's girl

She is my little angel

Big Girl!

Brad and I took her to school together. She seemed to have mixed emotions. She was excited but a little anxious too. I did shed a few tears as we walked out of the school. Oh, Father, please hold her hand. Be her protector and her guide. Give her peace when she is frustrated or scared. Help her to build relationships with friends and teachers. Please give her teachers patience and understanding. She is IN YOU HANDS. In Jesus name, Amen.

Here are a few more pics from her day:

She picked out her backpack by herself. We were online shopping and she really wanted this pink one.

We are here. Mrs. Saucier's room.

She is already being a helper.

Looks like Anna Grace missed Rainbow, her puppy, while at school.

What is MSD?

What is Multiple Sulfatase Deficiency?

Multiple Sulfatase Deficiency (MSD) is a lysosomal storage disorder closely related to the mucopolysaccharidoses in which all twelve of the known sulfatase enzymes are deficient or inoperative. MSD may also be called Austin's disease. There is currently no cure for individuals with MSD.

What causes MSD?

MSD is caused by the deficiency of an enzyme, Formylglycine Generating Enzyme (FGE) that is in turn responsible for activating a group of different enzymes called sulfatases. Deficiency of this enzyme results in defective functioning of all the different sulfatases. The sulfatases are a group of lysosomal enzymes that are responsible for breaking down and thus recycling complex sulphate containing sugars from both lipids and mucopolysaccharides. The lipids that contain these sulfated sugars are critical for normal brain development and function. Individuals affected with MSD experience similar problems as children affected with leucodystrophy and mucopolysaccharidosis.

This is an excerpt taken from the MPS Society as listed below. Additional information is available at http://www.mpssociety.co.uk/uploads/MSD_factsheet.pdf.

MPS House, Repton Place, White Lion Road, Amersham, Buckinghamshire, HP7 9LP

t: 0845 389 9901, f: 0845 389 9902, e: mps@mpssociety.co.uk, www.mpssociety.co.uk

Registered Charity No. 287034