Welcome

 

Ryder Cash Hauer was born on September 5, 2009. Immediately, we fell in love with this handsome 9 pounder! He entered the world without a peep, but was content to observe his surroundings. Doctors and nurses rushed to check him out and were bewildered that he wouldn't make any noise or protest to their poking and prodding. Thankfully though, other than slight jaundice, he seemed to be in good health and was just a “quiet baby with nothing to say!"


For the first few months of life, Ryder was very fussy and vomited a lot. At Ryder’s 5 month check up his pediatrician noticed nystagmus (an involuntary flutter of his eyes). This is the beginning of our whirl-wind story. We were referred to an ophthalmologist to check his eyes. That doctor requested an MRI to find the cause of the nystagmus, but stated his vision was perfect. The MRI indicated abnormal white brain matter and some swelling of the brain. This was a devastating shock to us! We immediately brought Ryder to a pediatric neurologist and thus began the 2 year search to understand what was causing all of Ryder’s symptoms. Up until July 2012, we believed Ryder had an unspecified form of Leukodystrophy (loss of white brain matter). However, news of an abnormal chromosome was detected and it showed that he had a mitochondrial disorder.  

Ryder was followed by a great team of specialist including a neurologist, geneticist/metabolic specialist, GI doctor, nutritionist, pediatrician, orthopedic surgeon, ophthalmologist and ENT specialist. A palliative care team was added as well. Ryder received occupational therapy, physical therapy, speech and feeding therapy, music therapy and DSI services each week for 1 hour sessions. Needless to say, he is a very special, hard working, busy toddler!  While we did not know what the future held for Ryder, we knew he was a happy little boy and we would do everything we could to provide him memorable experiences in life and keep him comfortable.

Ryder's unspecified form of a mitochondrial disease left his body unable to break down protein or effectively use it to provide energy to all the cells in his body. According to Douglas C. Wallace, Ph.D,mitochondria are tiny structures within our cells that produce 90 percent of the body’s energy. Nothing in the cell works without energy.”  

We understand that he had a progressive, degenerative and rare mitochondrial disease and there is no cure.  Ryder's symptoms came to include: nystagmus, MRI’s showing abnormalities specifically in his cerebellum and thalamus. EEG’s showing abnormal and slow nerve signals from his brain to the rest of his body. He had developmental delays; unsteady balance and was not able to stand or walk independently for months, although hope remained that he regain some of this skill. His ability to eat by mouth, swallow and get around independently was taken away from him.  He lacked muscle control and had tremors of his upper body. Ryder had painful bladder spasms and nerve pain that was controlled with medication. He spent a lot of the time in the hospital. From June until July 2012, Ryder was hospitalized for over a month for excessive vomiting and dehydration. He vomited multiple times every day for almost 2 months. We learned that Ryder’s stomach no longer emptied at all. His intestines had extremely low motility as well. The doctors replaced his G-tube (feeding tube) with a GJ tube so that formula would go directly into his intestines. Even with the GJ tube, Ryder continued to vomit, so he was placed on TPN (receiving all nourishment through a PICC line directly into his veins). Once he was weened off the TPN, able to handle continuous feeds through his GJ tube, and began to gain a little weight, he was cleared to return home. Towards the end of July, Ryder experienced prolonged seizures and was brought by ambulance back to the hospital.  He worked on regaining his strength once again, and was put on medication to try and prevent future seizures.  His vision and hearing seemed to be different as well.  The seizures continued at an alarming rate throughout the month and we learned that each seizure was a cell cluster dying.  Meaning that he was losing all his bodily abilities.  The doctors did tell us that even though it was hard to believe looking at him, he was not in pain.  Even though he was dealt many challenges at such a young age, it’s all he knew and he still managed to smile! 

On August 10 2012, Ryder was officially diagnosed with Alpers' Disease.

After making the decision that it was time to get Ryder out of Phoenix Children's Hospital, the family decided to move into The Ryan House (a wonderful hospice for children).

Ryder Cash Hauer passed on the morning of August 22, 2012.  Two weeks before his 3rd birthday.  He will FOREVER be in our hearts and on our minds.  He is a blessing and a reminder to make each day count.  We promise to never give up fighting for answers and helping create more awareness of mitochondrial diseases!


The best of the best!
Ryder was the most delightful little guy to be around! Besides being absolutely cute, he had the best smile, loved to snuggle and was a very happy little guy! His mom, dad and two brothers absolutely adore him along with his extended family and friends. He was mellow, content and enjoyed hanging out with his brothers. He loved being outdoors swimming, swinging or going down the slide. Ryder was the biggest baseball fan (for a 2 year old) you will ever meet! He loved to watch the D-Backs, read books or watch movies about baseball and of course play baseball every second he was awake. Ryder had a sweet and playful spirit and rarely ever protested even to all the pokes and prods he grew accustomed to. With eyelashes a mile long, bright blue eyes, an amazing giggle followed by a smile and his agreeable head nod to everything, he sure does know how to melt hearts!

  
Please read through the blogs to learn about Ryder's Journey.  
May he touch your hearts and inspire you to make a difference!

  
Getting to know the rest of the Hauer Family


Les, quite possibly the best husband and Daddy in the world, works as the Liaison for special needs students at EVIT for the Gilbert Public Schools District. He enjoys fixing bikes on the side. Every chance he gets he is riding his mountain bike or outside camping, fishing, playing baseball and swimming with the boys.


Denise received her Master’s degree in special education and enjoyed teaching children with emotional and behavior disorders, autism and learning disabilities for 12 years. Once the family learned about Ryder’s medical needs, they decided that Denise would stay home and care for Ryder. With this decision, the family income was cut down drastically. They ended up losing their house and moved in with Denise’s Mom, where they still currently live. After a year off of work, Denise began the accelerated nursing program with hopes to become a pediatric nurse and learn how to better care for Ryder. However, more than half way through the program, Ryder became very ill and the extended hospital stay took a toll on everyone. As of now, Denise has put her nursing school on hold to stay home and care for Ryder again.

Tyler is such a caring and sensitive big brother. He is 8 years old and entering 3rd grade this school year. He is a very bright boy and enjoys science, exploring and the great outdoors just like Dad! He also enjoys drawing and writing stories. When he grows up he wants to be a paleontologist, author and an inventor!

Noah is 6 and entering 1st grade. He is quite the entertainer, while not even being aware of it! He loves to play video games, sports, ride his bike and is very musically inclined. When he grows up he wants to be an ice-cream man (so he can eat all the ice-cream he wants), a rock star and have “infinity and beyond jobs” so that he can be the richest person in the world!

       last updated September 18, 2012