It has been a roller coaster ride (the worst ride ever) for our family since June 27, 2011. It was that day that our neurologist told us that she saw changes in the white matter in Anna Grace's brain and she suspected that Anna Grace has Metachromatic Leukodystrophy--a terminal, genetic, neurological disorder. We had to complete additional blood work to confirm this diagnosis. There are no words to explain our emotions on the two hour drive home from the hospital to my parent's house. As we approached my parent's home, we saw a beautiful rainbow. I immediately felt hugged by God. This rainbow arched over my parent's home and we could see the end of the rainbow radiating on our land. The rainbow remained there for approximately 30 minutes. My family and I all embraced this "hug from our God." Anna Grace and I even played in the drizzle as we thanked God for the reminder of his faithfulness. God has given us so many promises in His Word and he is trustworthy. I am "standing on the promises of God my Savior."
On July 18, 2011, we received the dreadful call. On the other end of the line, we heard the nurse say, the blood work and urinalysis confirmed that Anna Grace does have MLD. Amidst all the pain, we knew we had to act fast. Time is of the utmost importance in this disease. On July 22, as Brad and I were running errands preparing to go to North Carolina for a transplant evaluation, we received a call from Dr. McGuire saying that the lab called and said Anna Grace does not have MLD. I was confused, in awe, astounded and humble, all at the same time. We gave God the glory for this startling news. This news was an answer to prayer: God disagreed with the doctors and Anna Grace does not have MLD. Below is a Psalm of praise (thanks Brian for this scripture)
Psalm 116:1-5 NIV
I love the Lord, for he heard my voice;he heard my cry for mercy. Because he turned his ear to me,I will call on him as long as I live. The cords of death entangled me,the anguish of the grave came over me;I was overcome by distress and sorrow. Then I called on the name of the Lord:"Lord, save me!" The Lord is gracious and righteous;our God is full of compassion.
Our neurologist went on to say that the lab believes Anna Grace has Multiple Sulfatase Deficiency. After additional blood work, this diagnosis was confirmed.
We are trusting and singing the children's song, "Our God is so big, so strong and so mighty. There's nothing our God cannot do, for you!"