Update about Amryn

Hello everyone, it's Nick providing an update about Amryn since Lisa finds it too difficult to write.

As you know we became pregnant knowing that we had a 1 in 4 chance (statistically speaking) of having another child with the genetic disease called Mitochondrial DNA Depletion Syndrome. To be a carrier of this disease is very rare and for two carriers to marry and have children is even more rare (approx 1 in a million). The disease affects the replication of mitochondria in the cell meaning that as the child grows and her cells multiply her mitochondria become less and less functional. The mitochrondia are present in every cell of the body and provide the energy required for the cell to perform its function. The form of the disease that we have progresses extremely rapidly, something that the doctors have never seen before.

Nevertheless we have had two healthy children as gifts from our Gracious Father. They give us great joy and our prayer was that Amryn would also be healthy. However the Lord in His wisdom has decided that Amryn's journey on this earth will be short and that her life will follow the same path as her sister Rachel.

Below is an update about what happened on Friday and on Saturday.

Friday, November 23
We finally got to see our pediatrician at noon on Friday. After observing Amryn, he confirmed our suspicions and recommended that we take her to Children’s Hospital. She has continued to lose weight and is now 6 lbs 7 oz. Another significant symptom was that she has very little muscle control – her arms, head, and legs just flop without any resistance indicating that her central nervous system is already affected.

We will probably get a feeding tube inserted and prepare to take her home for her final days. We’re not sure how long she will still be with us but in comparison to Rachel she seems to be developing the symptoms quite rapidly and due to her low birth weight she might not live much longer than a few more weeks.

We thank God that she was born externally perfect and that we’ve been able to have wonderful days holding and snuggling with her. Her baptism was a good joyous day. We also praise God that even now her eyes continue to have moments of alertness where she even sometimes seems to smile -- at us or the angels we don’t know :)

Please pray that we will accept God’s plan and help us to believe that He does indeed work all things to our good. He gives life and he takes it away, blessed be the name of the Lord! Pray that especially Lisa will be comforted and feel the love of God during Amryn’s final days as she slowly fades away.


Saturday, November 24
We're still at Children's Hospital in Vancouver and we are hopeful that by Monday we will be discharged to take Amryn home. Her lactic acid levels were very high providing final confirmation that she is indeed suffering from the same Mitochondrial disease that Rachel had. Fortunately this helps spare Amryn from all the testing required to try to find a diagnosis.

They've inserted an NG tube which allows us to feed her Lisa's breast milk directly into her stomach via a tube going through her nose. This way she won't starve and Lisa can know that her basic nutritional needs are being met. She also had an IV put in when we arrived but this will probably be removed today. We want to ensure Amryn is made as comfortable as possible with a minimum of medical support/intrusion.

The staff here have been very helpful although it's hard to witness all the needles and bloodwork that is required to monitor her situation. Her tiny body makes it very difficult to extract blood from her veins. But this is necessary to determine what support measures are required. We will be thankful when this testing comes to an end.

Continue to remember us in your prayers. Lisa finds it especially difficult to feel God's love when it seems as if all the countless prayers for health have been in vain. We had really hoped that Amryn would be healthy. My prayer is that others too will not feel the same way but instead humble ourselves before God's sovereign Hand and realize that this world of suffering is not the way God created it. In His Wisdom He allows this broken world to continue until the number of the elect is full and I'm sure he won't let it last for a second longer. If we, sinful beings, are filled with such pain due to Amryn's sickness then how much more is the Perfect Creator longing to heal and restore His Creation. Our enemy is not God but our enemy is sin and Satan which destroy what God created good.

Come Lord Jesus, Maranatha!!

Nick