About Jared

Thanks for visiting! My name is Jane Hammer. Jared is my 'nephew'. He is such an inspiration to the world and it needs to be shared. So, if nothing else, please take a moment to read about Jared.

Jared's Story (as told by his mother, Melissa):

It was 10 years ago that Jared came into the world.  Little did we know the roller coaster ride we were in for. Jared had low muscle tone, was unable to suck a bottle and a multitude of other health issues when we brought him home. We were referred to the University of Iowa Hospital and Clinics and after countless test and no conclusive answers we were told Jared was failure to thrive. Jeremy and I knew there was something more.  

When Jared was 4 months old we were told he might have Cerebral Palsy.  Again Jeremy and I researched and knew that was not the answer either. There was something specific that was causing our son to have feeding issues, low muscle tone, hearing impairment and the fact he was still the size of a newborn. During this time we were feeding Jared off a spoon from the very young age of 4 weeks. He ate fresh goats milk mixed with rice cereal, whole milk yogurts, and baby foods mixed with butter and sour cream.  These foods were all recommendations from Dr. Burbach (our chiropractor).  He said it was very important that all babies get fat their first year.  Even with this diet Jared was not gaining weight.  He was maintaining his weight but not gaining.  

We were referred again to Iowa City when we had to switch pediatricians because of an insurance change.  We found a wonderful pediatrician that was sincerely concerned for Jared and said he'd help us find the answers we were so desperately looking for. We again did several tests at the University of Iowa Hospitals and in April of 2000 when Jared was 9 1/2 months old we found out he had Smith-Lemli-Opitz Syndrome—a rare genetic condition you will read more about below.  The main element of SLOS is the inability to produce natural cholesterol.  In our struggles to get Jared to gain weight by adding not so traditional foods to his diet we were also giving him the much-needed cholesterol his body was being deprived of. We never gave up trying to figure out what ailed our child. So now that we knew, we needed to help find ways for better treatment and hopefully a cure.

We decided to join a research study at the National Institutes of Health in Bethesda, MD. They placed Jared on a cholesterol supplement, provided us with imperative information about SLOS, followed his progress and setbacks and scheduled yearly visits to discuss and evaluate Jared.  Unfortunately this study is on hold now due to huge cuts in funding. This study as well as other studies that are going on in the U.S for SLOS have all been cut.  We need your help in keeping these studies going. Without continued research we will not be able to find better treatments and one day a cure.  

In those 9 1/2 months leading up to his diagnosis we were told Jared would probably never walk — at the age of 3 1/2 our baby took his first steps.  We were told he would never hear — at the age of 5 our son heard the rain for the very first time with his cochlear implant.  We were told he would never ride a bike — at the age of 8 our son wheeled around our driveway with training wheels.  We were told he may never speak — at the age of 9, our son received a communications device and through the wonderful world of technology he tells us everyday he loves us and asks for "kisses, please."  

We believe all things are possible and we believe with continued research there will be a cure for SLOS.  We will not give up.  Please help!  We thank you but most of all Jared thanks you!!

 

About Smith-Lemli-Optiz Syndrome

I'm willing to bet that unless you already know someone with SLOS that you've never heard of it. A HUGE reason for sharing this with you—to simply create awareness. If you cannot contribute monetarily, you CAN contribute by gaining more knowledge and passing it on.

Smith-Lemli-Opitz Syndrome (SLOS) is a genetic disorder where the body does not produce adequate amounts of cholesterol. SLO/RSH Syndrome is inherited as an autosomal recessive Mendelian disorder, like cystic fibrosis and sickle cell disease meaning both parents are carriers of the gene. The disorder occurs in approximately 1 in 20,000 births. Children with SLOS are affected by growth retardation, developmental delays and many different malformations. However, given the advances of medical treatment, often the children can now live to adulthood.

The SLO/RSH Foundation is a 501 (c) (3) charitable organization (so your donation is tax deductible) designed not only to provide a support network for families dealing with SLOS, but also to aid in finding better treatments, or even a cure for SLOS.  The money raised from this outing will go towards funding research studies for SLOS. A couple years ago, much of their funding was cut, so your donation is needed now more than ever to continue the progress of their research efforts.

Please learn more about SLOS at www.smithlemliopitz.org.

 

Nike Womens Marathon - October 18, 2009 - San Francisco

It all started with this marathon I (Jane Hammer) am running in San Francisco.

When I run, I think a lot about Jared and how far he's come. So, I thought why couldn’t my running help a very worthy cause, create awareness and raise a little money. Simply put - I run 26.2 miles... you help out children and a foundation greatly in need of funding. A great way to do this is to give one dollar for every mile or $26.20.

Then I got to thinking that maybe people could sponsor each mile of the marathon and that last mile would be 'Jared's Mile'. And that got me to thinking that why can't most people be a virtual part of that 'victory mile' for Jared.... a coming together from across the country for a common cause.

So........
 

JARED'S MILE

Run or Walk a mile for Jared!

On Sunday, October 18, 2009, you are invited to run or walk just one mile. This is a way to honor and celebrate how far Jared has come! Ten years ago, the doctors said Jared would never even walk. As Melissa (Jared's mom) says, "Today, Jared plays T-ball, loves to play in the pool, ride his power wheels 4 wheeler, and is the best Mario Kart Wii player I've ever seen." Your mile for Jared is a way to show support for SLOS/RSH. Go one mile and donate just one dollar.

Let us know where you completed Jared's mile and even better send a photo from that day. Wouldn't it be great to get someone in every state? Please send your name, location and photo doing 'Jared's Mile' to janeysue@gmail.com so we can post and share! Please share this with your friends and relatives as well. Even if you've never met Jared, your support is important to continued efforts of the SLOS/RSH Foundation. One mile. One dollar. So many lives.

 

Some group walks have been arranged. Contact myself or the listed coordinator with any questions on these. Please also let me know if you would like to arrange one in your area so we can share the information!

Jared's Mile - Holy Cross, IA
10:00 a.m. - 11:30 a.m.
Meet: Near the ball diamond to walk/run your mile in Holy Cross!
Coordinator: Melissa  |  wulfekuhle@hotmail.com

Jared's Mile - Dubuque, IA
1:00 p.m. - 2:30 p.m.
Meet: St. Columbkile's School Gym to walk/run your mile on S. Grandview!
Coordinator: Amy  |  johndfreund@hotmail.com

Jared's Mile - Chandler, AZ
9:00 a.m. - 10:30 a.m.
Meet: Desert Breeze Park
Enjoy the railroad, carousel and park afterward!
Coordinator: Chantil  |  chantilm80@cox.net

Jared's Mile - Madison, WI
3:00 p.m. - 4:30 p.m.
Meet: Dominion Park on Wyalusing Drive
Coordinator: Jolene  |  jokoopmann@yahoo.com

 

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Multiple participants dedicating runs to Jared on October 18th:

Nike Women's Marathon - San Francisco, CA

Des Moines Half Marathon - Des Moines, IA

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Join our group on Facebook! Click here >>>

 

Jared's Mile T-shirts!

Pre-order your Jared's Mile t-shirt today for only $15 (plus shipping if necessary). Contact me for more details!

 

Thank you for learning more about SLOS and thank you in advance for your contributions.

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support these fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!  wwwJaredsMile.com

::  Jane Hammer

::  janeysue@gmail.com