The diagnosis

As you may recall from an earlier post, two Fridays ago Ariella had surgery to switch out her temporary feeding tube for a Mic-Key button and at the same time we also had a muscle biopsy done in the hopes that we might learn what the underlying cause to all our sweetie's symptoms might be. Well last week we got an answer, according to our neurologist Ariella has a condition called Nemaline Rod Myopathy. This is an extremely rare genetic condition that effects about 1 in every 50,000 births. This disease interferes with how the proteins in the muscles are formed. In a healthy body the proteins that make up the muscle tissue interlock and weave into a strong pattern that allows the muscles to expand and contract such that they can regulate things like breathing and heart beat. In a Nemaline body the proteins don't interlock and weave the way that they are supposed to instead they form tiny individual strains of sorts that look like little sticks that never touch, very much like the fingers on your hand. If you don't deliberately cross them your fingers would never touch. Well the problem with this is that because Ella's proteins don't interweave her muscle won't expand and contract in order to help regulate some of these key functions.

Moreover, there are progressive and none progressive forms of this particular myopathy. The non-progressive usually presents in adults and older youths; it can oftentimes be managed and supported through therapy and other treatments. However, in young children and infants the disease is often progressive and the younger the child the more progressive. And in rare occasions like Ariella's when the child is born with it, the disease is fatal. The doctors cannot give us a timeline because it is different for every child it could be a matter of days or a matter of months the only thing they can say with any certainty is that whether it is through respiratory distress or heart failure our angel will die.

This is the report that we have received from the doctors, however I must share with you another report. The report of The Lord Jesus, in His Holy Word He says in Jeremiah 29:11, "For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope." The Lord also says in Psalm 119:17 "I shall not die, but I shall live, and recount the deeds of the LORD." I am reminded of a gospel classic by Ron Kenoly, "Whose Report Shall You Believe", the chorus of the song says - "His report says I am healed, His report says I am filled, His report says I am free, His report says victory."

Ultimately I believe that with God nothing is impossible and furthermore that the only way our daughter can be cured of an incurable genetic disease is for God to work a miracle. And so while we wait on God to do what only He can we also prepare ourselves for what very well maybe the inevitable. We enjoy everyday that God gives us with our daughter and we make the most of each moment.

Whether God saves our daughter or chooses to bring her back home to Him in heaven, either way WE love and trust God. Rachel and I dedicated Ella's life to The Lord and we believe His thoughts and plans for her life are good and perfect. We are more than conquerors today because we have learned that whether Ella lives on Earth or lives forever in Heaven, God is still God and He is always good. As for me and my house we will believe the report of the Lord.