DYLAN UTTER'S STORY

Our four year old son Dylan Michael Utter was diagnosed with Spinal Muscular Atrophy when he was seventeen months old. As you can imagine total devastation hit our family like a ton of bricks. Dylan was born a healthy 8lb. 4oz baby with no signs any problems what so ever. It wasn't until about 10 months that I started to realize he wasn't reaching milestones for instance crawling. I brought this to his pediatrician's attention and he said that this was perfectly normal for a baby that is big for his age. Yes, Dylan was a VERY big baby and as a first time mom not wanting to believe anything could be wrong with my baby, I went with it with no questions asked. A couple of weeks had passed and I had noticed a slight head tremor, again I bring this up to the doctor and once again he tells me that this also is normal, unless he is not coherent or having seisures he's fine. So, again I trust what the doctor says and once again we leave and go about our life.

At eleven months old , only hours after receiving his DTAP vaccination I noticed a MARKED weakness in his ability to hold his head up as well as sit unassisted. As time passes, surprise surprise he is still not walking or even crawling. At his next doctor's appointment, again I lay on the table ALL of my concerns with Dylan, once again he excuses my concerns and says "All children are different and he wasn't crawling or walking by 15 months he persue more testing. At Dylan's 15 month check up there was no change. Dylan isn't doing either, crawling or walking, and has gotten worse with head control and trunk support. I enter the examination room, I hand Dylan into the Doctors arms and watch as Dylan folds over like a sandwich. Finally, he turns to me with a look of disbelief and despair and immediately sends us to Albany Medical Center for testing, the day after Christmas. At this point he gave us really nothing to go by or even to expect, other than there was someting seriously wrong with our child. Anxiety was running rampid among our family, I remember feeling as though I couldn't breath, scared to know what is wrong with our perfect little boy. We stayed in the hospital for three days and still no answers. After another month goes by he receives an EEG, EMG, CAT SCAN, and a genetic blood test where they come up with the diagnosis of spinal Muscular Atrophy. As we stood in the neurologist's office awaiting the test results, I am going out of my mind and feeling very unsettled. The doctor enters the room and I could just feel the negative energy he brought to that room and I knew that what he was about to tell me wasn't good news. The doctor says" Ok the blood test came back and his diagnosis is Spinal Muscular Atrophy." Now, not having the first clue what that was I started with a million questions. I will never forget that moment when I asked " Is this a disease that can be cured?" His response was "No, this is the number one gentic disease that kills children." My whole self just felt like a mack truck hit it and my whole world came crashing down in a heartbeat. I held dylan so tightly against me and dropped to the floor and just rocked and cried what seemed like hours. The next few days all I did was look into my son's innocent eyes and cried. I couldn't possibly wrap my head around the news that was slammed at me like a rock to the head. I couldn't fathom the thought that my precious gift that was given to me could possibly have his life shortened by such a horrible disease. It took some time to let the fog clear, but I did pick myself up and knew I had to begin " FIGHT MODE." Since that very day I constantly knew in my heart that there is something somewhere out there that can help save my son's life!! And from that day on our incredible journey began to search and find what I knew was out there........ I just had to find it!!!! Our journey has been a long and bumpy road with a lot of ups and downs........many hospitalizations, trying all sorts of medicines, trying all sorts of alternative practioners, herbal and homeopathic remedies( which all helped him in certain ways.) I never gave up and continued to research to find the right medicine or treatment that was out there. It was then that I came across information on stem cell treatments!! I had a couple of companies that I had in mind but I had to eliminate it down to one......Dr. Feinerman!!!! I knew in my heart that this was the best choice for my son through all the research I had done. In April of this year (2009) we took the long journey to Lima, Peru, where Dylan received two spinal lumbar punctures of umbilical stem cells as well as his own that was harvested in Peru. The experience was absolutely AMAZING!!!! The treatments went so smoothly it was unbeleiveably stress-free! The medical staff showed the most wonderful hospitality that we surely don't receive in the states, the doctors ALWAYS were very informative on what was going on or what was going to happen while being extremely personable. The overall care that my son received was very sweet, loving, and always out of love!! Dylan is currently 4 months after his treatments and is showing a marked improvement! His overall strength in his extremedies has improved, increased muscle tone, he is lifting his legs to his belly while laying on his back as well as kicking. he has increased function as well as control of his fingers, bearing more weight and most of all his confidence has flourished and this is "PRICELESS" to me as his mother to see. We are all so excited for the months to come with the endless possibilities that are up ahead for Dylan!!!! I REALLy want to thank everyone in Peru who had anything to do with Dylan's care. Words cannot express how you have touched Dylan's life in so many ways. Our lives have changed due to your kindness and personal attention to every detail not only physically but emotionally in understanding how important this journey has been to us.We love you all and again thank you for helping us save our son's life!! I especially want to thank all of our friends and family that have supported us no matter what. To my mom ....my rock and solid pillar in times when I feel hope and joy will never come again, you've always been there to help me back up. Mom, your selfless acts have taught me more than you will ever know about how to be a mom. To my husband, I know this has a been a rough road to go down but.......we did it and we did it together, I love you!! My advice for anyone thinking about seeking stem cell treatment no matter what the disease or illness......GO FOR IT YOU HAVE NOTHING TO LOSE, ONLY ENDLESS POSSIBILITIES TO GAIN!!!! Everyday is a new beginning and a gift for our son and for that we are grateful!!!!