Welcome Everyone,

I am Ryker's Aunt and I have created this page to keep everyone updated up on all the latest news on our little miracle Ryker. I am going to begin this blog starting with his story after birth. If you would like more information regarding his diagnosis in utero you can find that information on Rachel's blog http://jrwarner2.blogspot.com/.

First I want to send a big shout out to all the family members and friends that have really been there for Jason and Rachel and offered everything you have to offer. Here is what Jason had to say about it today on facebook. "What a miracle this has been this has truly been one of the most amazing things that a child could only bring to my family and friends that have been tapped into such a emotional, spiritual level that I belief only exists for those who chose and let it be so amazing in there lifes. All of us that are involved have already reached levels beyond what I thought were possible and this journey is only 40 weeks in imagine where we are all going to be in the end what a true blessing ryker is bonds are being made that are unbreakable thanks to all those who have been such a huge part in this Miracle!!!! "

Ryker was born in Utah March 7th and came out crying and looked beautiful. We were so excited to see that he had great color and looked amazing and perfectly healthy from the outside. We understood that he had Heterotaxy and that it was a serious condition but we were about to get a loud wake up call of how serious his condition was. The Dr's that were working on Ryker gave Jason and Rachel three different diagnosis (two in utero and one when he was born) of which type of heart condition Ryker had along with his Heterotaxy. The last conversation they had with the Dr. left them feeling uneasy and not certain they had Ryker in the right place. By the grace of God they were then informed by two amazing women, (and mother's of children with Heterotaxy) Kristen Spyker and Jessamyn Fields that the severity of Ryker'scondition is much worse than the Dr's were telling them. Most importantly they suggested that it was imperative to get him to a top Pediatric Heart Center. After talking with these two mothers and hearing from them that Heterotaxy carries a 80% mortality rate and the Hospital that has a significantly lower mortality rate is Boston Jason and Rachel new they had get Ryker to Boston ASAP. Making the hardest decision they have ever made Jason and Rachel sent their two girls to Montana with their Grandma and left their two son’s in UT with their Mom.

Jason, Rachel and Ryker were flown from Utah to Boston on an Air Ambulance via Air Crititcal Care http://aircriticalcare.com/ . Air Critical Care is highly recommended by Jason and Rachel if you are ever in need of a transfer.

One of my best friends brother and his wife (Chris & Lori Ilgenfritz) so happen to live 10 minutes from the Boston Children's hopsital. Being the amazing people that they are volunteered to let Jason and Rachel stay with them until they figured out how to get Ryker the care he needs. These two individuals have been amazing and our family will forever be grateful for the amazing care, concern and compassion they have shown to Jason and his family. They have gone above and beyond what you could ever imagine to help make this tremendously hard situation bearable for not only Jason and Rachel but all of us.

To put it simply Boston has diagnosed Ryker with Heterotaxy RAI (right atrial isomerism) with asplenia and ventricular discordance. His heart condition is so complex that he will need multiple surgeries. Jason and Rachel were told today that the top Pediatric Heart Surgeon Dr. Pedro del Nido looked over Ryker’s echo and was not going to wait any longer for his surgery. He informed them his surgery needed to be scheduled for the week of 3/18/2012.

Many people have asked how they can help the family. To get Ryker the care he needs Jason and Rachel have incurred and will continue to incur many costs. The best way you can help is to give a monetary gift to help pay for their expenses. Our current goal is to raise enough money to pay back the loan for $28,000 it cost to fly Ryker via Air Ambulance from Utah to Boston. Ryker is currently at the #1 rated hospital for Pediatric Cardiac Surgery. Because his heart condition is so complex the Dr’s in Boston give him the best chance at a quality life. Ryker’s care will be long term, expensive and intense for him and his family.

We thank you for your thoughts, prayers and encouragement and ask that you please keep them coming.

God will continue to bless our journey and we will continue to follow him and know he has a plan.

God Bless you all and stay tuned.

Tisha


****If you would like futher informatoin regarding Heterotaxy please visit Kristen Spykers website http://heterotaxysyndrome.org/wordpress/what-is-heterotaxy-syndrome/ .