On Tuesday June 2, 2015 Chelsea and Derek welcomed their beautiful baby boy Colten Brady Ruf to the world. Colten was born at 4:05PM and was 9lbs 12 ounces. Derek and Chelsea were elated! After a couple days of recovery at Peach Arch Hospital they were unexpectedly transferred to the NICU (Neonatal Intensive Care Unit) at Surrey Memorial on Thursday, June 4th when the pediatrician noticed Colten had low muscle tone. Colten then spent 10 days in the NICU while completing a variety of tests with Derek and Chelsea by his side day and night thanks to the opportunity for them to stay in the hospital at the Ronald McDonald House. After the 10 days in the hospital, none of the test results pointed them in the right direction to explain his low muscle tone so they were sent home to wait for genetic testing result to be returned by the lab.
In just over a week the genetic testing results came back and with heart breaking news that Colten had been diagnosed with Spinal Muscular Atrophy - Type 1. SMA is the leading genetic cause of loss of life for babies and young children, and there is no cure for this disease. Current statistics show that the average lifespan of a child with SMA Type 1 not put on ventilation or life support is 8 months. The SMA gene is carried by 1 in every 40 people, most of which never knowing they are carriers of the gene.
Currently Derek, Chelsea and Colten are in and out of Children’s Hospital where they are working with a variety of neurologists, respirologists, physiotherapists, occupational therapists and nutritionists. Colten has been fitted and equipped with a bi-pap mask to assist with breathing when sleeping and a surgically inserted feeding tube to ensure he has the proper nutrition, and to reduce the chance of aspiration from oral feeding. Our hope is these devises will continue to allow Derek, Chelsea and their family and friends to make the most of the time they have with Colten in the comfort of their own home instead of the hospital.
As very close friends of Derek and Chelsea we continue to be amazed with the strength, courage, dedication and commitment these two are demonstrating during this real life nightmare they are living. Colten Brady Ruf is a little angel whose smile lights up the room and thanks to his two loving parents, family and friends is completely surrounded by love every waking minute of the day.
As friends, family, co-workers, colleagues and fellow citizens, it breaks our heart that there is nothing we can ever do or say that will change the diagnosis of this terrible fatal disease. We can only attempt to be as dedicated and strong as Derek and Chelsea are being to their baby boy and support them in any way possible during this time. Therefore we have set a goal to raise them $20,000.00 to reduce the burden of financial stress that inevitably comes during this difficult time.
We appreciate your support during this difficult time and sincerely are thankful for each and every donation.
Thank you for your love and support,
On Behalf of Derek, Chelsea & Colten