SammyBoys Spectacular USA Roadtrip

This is my SammyBoy he is almost 10 years old. He is kind and optimistic, but can be sarcastic without being malicious. He loves stuffed animals, he takes one everywhere he goes. Especially "frosty" a polar bear who has gone with him to every medical appointment and hospital stay the last 6 years. Right now he's like most boys he likes Pokemon, riding his bicycle, swimming, Legos and hanging out with his little brother.He also loves to travel he wants to go to Paris to see the Eiffel Tower, Venice to see the Canals, and he wants to see waterfalls in Hawaii. Unfortunately he will probably not get to visit most of the places he wants to (due both to health, and altitude restrictions).

10 years my SammyBoy was born, although it was the happiest day of our lives it was also the most devastating. Samuel was born with Hypoplastic Right Heart Syndrome which means the right half of his heart is not functional. The condition that he has that caused the right side not to develop is called Pulmonary Atresia meaning he was born without a heart valve.

To date he has had 16 surgeries primarily to reroute how his heart pumps blood through his body and to fix complications along the way. Most recently he had a coronary aneurysm repaired in September 2013.

On June 20, 2014 during a routine cardiac appointment an EKG showed that Samuel has developed Sinus Node Dysfunction. Which means his natural pacemaker is no longer functioning well. In Samuel’s case his heartbeat takes a long pause every 15 beats or so. This condition will slowly get worse over the next few years or so (we have been told anywhere from 6 months-a few years) until he climbing out of bed will be too difficult. When that time comes he will have an open heart surgery to have a pacemaker installed.

The examination also revealed that he has also developed Aortic Valve Regurgitation. His Aortic Valve is leaking so that blood that has just been pumped out of the heart comes back in before circulating through the body. This also causes extreme fatigue, pain, and fainting. We have an appointment on June 26, 2014 to determine the timeline for having this valve replaced.

The Coronary Aneurysm, Sinus Node dysfunction, and Aortic Valve Regurgitation are all signs that Samuels heart has begun to wear out. This is not a surprise to our family per se but it is much earlier than we expected.

When Samuel was born we were told he would live a relatively normal life but that his heart would eventually wear out from working twice as hard as a normal heart. When this happened he would need a transplant. Our goal has always been to get Samuel to adulthood as current heart transplants in the best of conditions only last 8-10 years. Many recipients never get a second transplant due to being considered lower priority to those who are waiting for a first transplant.

In addition to all of these issues, Samuel will also need a liver transplant at the same time his heart is replaced. This is due to the way his heart has been modified; his liver receives the least amount of oxygenated blood and has to work harder than all of his organs to simply function.

After a long discussion my husband and I would like to take our SammyBoy on a 28 day 9000 mile road trip across the United States to see all the National and State Parks he would like to visit while he is physically able. He enjoys short hikes and we would like to be able to take him to hike some of the places he would like to (like Silver Fall State Park in Oregon) before he is unable to hike at all. Currently he has altitude restrictions and is already unable to walk more than a few feet at elevations above 9,000 feet. So it is important to us that we do this trip while we are able to.
 
The current estimate is that the trip will cost $10000.00 we are trying to raise $8000 of that. The cost will cover lodging, gas, meals, and sight seeing costs. I am also raising money through my online Etsy business "JigsawHearts" my goal is to sell 650 items so that donations will not be necessary. We are doing everything we can as far as planning to lower the cost of this trip. Our trip will begin on July 9, 2014

We would like to be able to pay for this trip ourselves but our medical expenses do not really allow us the luxury of spending the money needed to fund this trip.

Samuel is classified as a disabled person and is eligible for SSI and Medicaid, however our household income is just enough to disqualify us from actually receiving aid. We spend on average $400-$500 a month for medications, office visits, and premiums. Which we know is excellent compared to others we know. However our office visit on 6/26 will be $1100 and that must be paid before services are rendered. Due to necessary appointments like this one, we just don’t have the extra money to put away for the trip.

We are also Make a Wish eligible, but after speaking to the Make-A-Wish coordinator we were told they really don’t grant these types of wishes. They are happy to send us somewhere such as DisneyWorld, or D.C., or even a specific National Park but are not able to fund a trip of this type due to the type of organization they are.

If you are moved to donate and are able any and all amounts are appreciated even $1! Thank you from the bottom of our hearts for reading, sharing, and donating.

For more information on SammyBoys ailments:
http://www.mayoclinic.org/diseases-conditions/sick-sinus-syndrome/basics/symptoms/con-20029161
http://www.mayoclinic.org/diseases-conditions/aortic-valve-regurgitation/basics/symptoms/con-20022523
http://www.chd-uk.co.uk/types-of-chd-and-operations/hypoplastic-right-heart-syndrome-hrhs/

Donations

  • Irene Robles 
    • $25 
    • 71 mos
  • Irene Robles 
    • $25 
    • 71 mos
  • Fred Hess 
    • $25 
    • 71 mos
  • Chandra Ramiah 
    • $200 
    • 71 mos
  • David Bray 
    • $50 
    • 71 mos
See all

Organizer

Denise Hess Gilles 
Organizer
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