Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours.
Mark 11:24God is good!! He may have timing I am not fond of, but He keeps His promises and answers our prayers. After a long, painful year last year, Tom and I wanted nothing more than to find a cause for what happened to Grant and Nathan. We wanted answers on how to move forward with having a family. God has answered us!!!
Yesterday I had an appointment with a specialist from U of M Hospital. Tom and I went, having low hopes of getting any useful information. We arrived early, checked in and sat in the waiting room. We did not wait too long and were called back to a room. That is where I almost broke down many times waiting for the doctor to come in. I did not know what to expect and I was so nervous.
After what seemed like eternity, Dr. Ramira came in. First, she apologized about not being prepared for the appointment, but she did have the autopsy results. She said some other stuff, but eventually got to the point. The diagnosis of the autopsy; Lethal Multiple Pterygium Syndrome (LMPS). Never heard of it? Well, neither had the doctor (that's why she apologized for being unprepared). What we do know is that we FINALLY have a diagnosis.
LMPS is genetic. It is either autosomal recessive or X-linked. If it is autosomal recessive that means both Tom and I are carriers and we had the unfortunate pleasure of having two children in a row with the disease, but it will not happen every time. If it is X-linked, I am the carrier and LMPS will only affect our boys.
For more information on the syndrome you can google it or this link gives a summary of LMPS.
http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN&Expert=33108
Remember if you google it, Multiple Pterygium Syndrome has different types. The type Grant and Nathan had is the Lethal type NOT Escobar. Most information you will find is on the Escobar type and is not what Grant or Nathan had.
I want to thank everyone who has kept us in their prayers during this past year. We are so blessed to have such great family and friends. I also want to thank our doctors and especially Dr. Mason Barr (the doctor who performed the autopsy) for working so hard to find a diagnosis for us.
Tom and I still have a long road ahead of us. We would like you to keep us in your prayers as we continue testing and talking with doctors about our options for our family.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7
Praise God for His faithfulness in giving us our gift!
