Adventure Gallery

Images from the many places and things we have experienced through our adventures with Nora

Blog Gallery

We take so many pictures for our blog. These are some of our favorite pictures from all those posted in the blog.

Professional Gallery

Professional pictures taken of Nora through the years. These are hand-picked because we think they are the best ones.

My wife and I had been married for three years when we decided to start a family.  To prepare for this life altering event, we moved across country to find jobs that were stable and a city we felt was safe to raise a child.  Once the decision was made, we got pregnant very quickly.  Like all expectant parents, the next nine months were exciting; we decorated our nursery, bought cute baby clothes and toys, and attended baby showers thrown by friends and family.

The day our daughter arrived, was amazing.  This was our first child, so the thrill of Jaime's water breaking and the subsequent rushing to the hospital was surreal and exciting.  Our daughter came out around 1:40 am and we named her "Nora".  Nora kicked and screamed and did everything a normal newborn does.  She was so beautiful and we were parents now.  In the following days, nora passed all of the newborn screening tests with flying colors.  We were even able to take her home early.  While there was a considerable amount of readjusting, parenting was second nature.  

Things began to change around Nora’s two month checkup.  Nora’s pediatrician noticed that the muscle tone in her legs was underdeveloped.  Not having any other children, we were not keen to these developmental delays.  Without alarm, we were simply instructed to continue a daily tummy time routine and “all children develop at their own pace”.

Following that visit, we practiced tummy time constantly.  We were determined to get our daughter back on track as quickly as possible. After four weeks with no motor developmental improvement, we knew there was something seriously wrong with our perfect baby.  Spending time with children the same age as Nora, we noticed how truly delayed she was. She was unable to hold up her head, and her legs simply stopped moving alltogether.

When we returned to the pediatrician’s office at four months old, they suspected possible Cerebral Palsy and referred us to a Neurologist.  Within the first five minutes of meeting the Neurologist, he threw out the term SMA (Spinal Muscular Atrophy).  Already familiar with SMA, we were completely devastated.  We knew it was a permanent disease for which there is no cure or treatment.  We expected Nora to be handicapped her whole life.  What we didn't expect was that her life was in jepordy.  To confirm the diagnosis, a simple blood draw and an agonizing three week wait, we received the horrific diagnosis of SMA Type I.  A Type-1 child in SMA terms is considered the most severe and also was terminal - most type-1 children do not live past two years.

We began to spend every possible minute with Nora.  Our primary goal was and is to make sure she is happy and comfortable all the time.  We have slowly come to accept the fact that Nora will never walk, never sit, may never talk, and will die most likely within 5 years.  SMA is a degenerative disnease, meaning that the longer she lives the weaker she will become.  This became evidant when, at 6 months old, Nora began choking on her feedings.  We were informed that she had begun to loose her ability to swallow.  We had to put a feeding tube in her belly so she could eat.  The worse part was, because she choked, she got food into her lungs and developed and infections which caused pneumonia.  We came close to loosing her and she was hospitalized. 

SMA child,because every muscle in her body is weak, struggle to breath.  They are not strong enough to cough, so we must cough for them with a machine.  She also needs a machine called a BiPAP which helps push air into her lungs while she sleeps.  As the disease progresses she may have to be on this BiPAP full time.  We have to carry a suction machine with us at all times because Nora, who no longer swallows, chokes on her saliva so we suction her mouth frequently. Nora now has tens of thousands of dollars worth of medical equipment in her nursury.  Her room now resembles a hospital room. And if this wasn't enough heart ache, the hospital bills and medical bills keep coming in so we are always fighting with insurance claims and medical equipment providers for the care Nora now requires.

Out of sheer desperation, Nora was enrolled in a clinical drug trail to test a medication that may only slow the muscle deterioration.The primary side effect being liver failure is the least of our worries.  The drug did not provide and benefit though.  The FDA has yet to approved stem cell therapy in the United States, so currently, there are no treatments for SMA.  We had considered taking her overseas for stem cells in hope of extending her life if even just for a few years.. but Nora's weakness and dependancy of her equipment makes us unable to fly on a commercial airline. 

Unfortunately there may never be a cure for SMA in Nora’s life-time.  It has become my mission to spread the word about SMA and Nora’s daily struggles.I hope that with enough funding, research can begin in the US that will help future SMA children.I believe it is also my responsibility to draw awareness to those families planning to have children someday.