Support for Mason's Journey

Mason was born March 18th, 2013. His mom and dad suffered through infertility to have him, and at 28 weeks he started measuring very large. The dr took him out via planned cesarean at 38 weeks, and he came out at 9lb 15oz and 22in! Although he was a term baby, he was automatically taken to the NICU on 100% oxygen. After several blood tests, EKGs on his heart, and a week in hospital he was released to go home with a simple diagnosis of respiratory distress. Later he was diagnosed with a laryngomalacia, and had surgery to fix an undescended testicle and two hernias. Over the next couple of months his pediatrician started noticing his growth patterns were extremely high in percentages. The right half of his body was measuring larger than the left, and his head was off the charts. After seeing a geneticist (and although it can't always be confirmed with blood testing) he is suspected to have Beckwith-Wiedemann syndrome (BWS). This can cause a lot of issues such as a large tongue, excess growth in the limbs and abdomen, hernias, undescended testicles, and many other symptoms. Because of the excess growth in the abdomen and limbs, tumors are commonly found in kids with BWS and they are monitored every 3 months with ultrasounds and bloodwork until the age of 7. In November 2013 an MRI showed that his skull formed differently and it was too small for his brain, which caused his brain to be pushed down into his spinal chord. This is known as a type 1 chiari. His chiari prevented spinal fluid from circulating, and caused a build up of fluid on his brain which is known as hydrocephalus. Hydrocephalus can cause a whole other world of problems, and can be fatal. The day after Christmas in 2013 Mason had surgery to shave the C1 vertebrae to relieve the pressure of his brain and let the fluid drain itself. A follow up MRI of the brain will show if the surgery was successful. He had another surgery in March 2014 to fix his undescended testicle for a second time, hopefully successfully this time! In March of 2014, shortly after Mason's 1st birthday, a mass was found on his liver. An MRI paired with contrasting dye was done to help doctors determine what kind of tumor they are dealing with: benign or malignant.  The results from the MRI revealed that the tumor is most likely malignant. A biopsy will be done to further investigate and a surgery, possibly more, will have to take place due to the location of the tumor.  This is a young family in transition.  Ashley, Mason's mom, moved to Dallas so Mason can recieve better medical care while Jon, Mason's dad, stayed in Minot, SD for work. Any support is appreciated whether it is a prayer, monetary donation, or especially helping raise awareness for BWS! Please share Mason's page so more people can learn about this sweet boy!