7.23.14 Dedication

I just learned about this little girl near where we live. Obviously her parents are very busy right now so I will not include any names, but please keep them in your prayers. From a family friend relaying the mother’s updates…

“(She) is now out of surgery and the news is not what we all had hoped for…her heart is becoming enlarged due to narrowing of her lungs. The doctor stated that there is nothing they can do to help her, including no medication options. Her doctor mentioned having her on oxygen at night and he is also referring her to be added to a lung transplant list. Her doctor is very hesitant to discuss anything further before he meets with his colleagues but as you can imagine this news is extremely hard to swallow.”

Yes, this little piece of elastin that is missing in people with WS is so incredibly crucial. I once heard that the missing part of the elastin gene is like a book missing only 4 words. Think about it… only 4 words in a whole book! Seems pretty tiny, but can definitely change the outcome of the entire story.

Please keep this little girl and her parents in your prayers.

7.22.14 – Stats and News Interview

7.22 chart

7.22 graph

A HUGE thank you to Steve King at News Channel 3 for meeting me on the 101 today. Thanks to the folks at Elk Country Campground for calling the station and arranging!

The path to the interview is http://kiem-tv.com/video/man-riding-bicycle-across-country-spread-awareness-williams-syndrome

That was the excitement for the day! Days like today put energy back in me, I feel like Williams Syndrome, the purpose of the trip, is being told. I am about 250 miles from Bend. I will hit the 5,000 biking mile mark just before there. I can hardly believe it!!!

I woke up this morning with Elk in the field. SOOO cool. The shoreline in the pic at the Redwood Forest does not look pretty, but it was. Very natural. Other than that, I made it to Jedediah National Park. It was really really hilly today. I know I am getting stronger, a couple of months ago I would have been walking these hills. I was able to ride them today, slowly, but I rode.

There is a picture and a link for the path home at the bottom of the INDEX page. On the link you can zoom in to see more detail. Again, Thank you Mike Samuelson for mapping this. I did not have the resources (computer) or time…

Elk Country Campground, morning 7.22

Elk Country Campground, morning 7.22

Coastline at Redwood Forest 7.22

Coastline at Redwood Forest 7.22

7.21.14 Stats

chart 7.21

graph 7.21

Nice ride day today. The first about 20 miles was an incline then the rest of the day pretty much downhill then flat. Trying to mentally prepare for the Cascade mountains that I will be passing through soon.

Did I tell you all that Dan from back home is joining the ride/run? He will be riding the bike back to MD. He is working one more week and buying a one way ticket to Bend Oregon. Guess it is official since the moms have talked. Can’t wait. We have been friends since elementary school and he loves the kids with WS too. He has been to a couple of the picnics at our house. We are hoping to hit the road by Aug 1 (give or take a day depending on when plane tickets are most reasonable.)

A HUGE THANK YOU TO MIKE SAMUELSON!!! He is a retired Navy Commander, an Ultra marathoner and he and a friend turned their passion for running into a race management company – Altis Endurance, the website is http://altisendurance.com He has created the path for the run back home. The only little diversion will be to go to Slippery Rock University in PA to see some friends (I did not tell him this but his path is taking me pretty close to there anyway.) Copy the path into your browser and there you have it. Since I will be on foot I will probably not stray far from this path at all (on the bike I changed paths a couple times.) He included some rail trails and tow paths so it will be a really nice trip back!
https://www.google.com/maps/dir/Bend,+OR/Parkton,+MD+21120/@41.4651702,-100.4232122,7z/data=!4m14!4m13!1m5!1m1!1s0x54b8c0ffa5d3d251:0x1088e7acc720d1b4!2m2!1d-121.3153096!2d44.0581728!1m5!1m1!1s0x89c869393e074bcb:0x9a39939f94759f5!2m2!1d-76.675922!2d39.6307998!3e2 …… HOW COOL IS THIS!!!!!

Elk Country Campground in Trinidad CA is awesome! The grounds here are amazing. The people are soo nice. They came up to me about 9:30 pm and wanted to know about the trip. They gave me candy, pies, homemade jam from the berries that grow there. They were so impressed by the trip they called the local news (Channel 3) and they are supposed to meet me on the road tomorrow. And get a load of this – the 200 acre campground is for sale!!!! Anyone have 1.2mm to invest with me? PLEEEEEASE… It is perfect!!!

101 between Fortuna and Trinidad, CA  7.21.14

101 between Fortuna and Trinidad, CA 7.21.14

7.21  Trinidad CA

7.21 Trinidad CA

Elk Country RV Resort 7.21.14   Trinidad, CA

Elk Country RV Resort 7.21.14 Trinidad, CA

Elk Country Campground pic (from their website). Trinidad, CA

Elk Country Campground pic (from their website). Trinidad, CA

Elk Country Campground pic (from their website). Trinidad, CA

Elk Country Campground pic (from their website). Trinidad, CA

Elk Country Campground pic (from their website). Trinidad, CA.  The elk REALLY do just wander around!!!

Elk Country Campground pic (from their website). Trinidad, CA. The elk REALLY do just wander around!!!

7.21.14 Dedication – Jacey

I was going to wait until Jacey turned 4 to make another dedication to her but I thought now is a good time. She is one of my little girlfriends from VA. I met her at IHOP on day 3 of the ride, wow – April 3! Love her~ Anyway she just had a really hard time and I want to share with you what a fighter she is. Late last week she was not feeling well. Come to find out she had urine backing up into her system, her blood pressure dropped like 30 points and she was a sick little girl. Her mom reported on FB that by Sunday she was feeling much better, oh yeah, Jacey’s feeling better too : ) She is a trooper!

jacey 2

jacey

jacey 3

“Jacey Riann Hurst will turn 4 in August, she was diagnosed with Williams Syndrome when she was a year old. Jacey has multiple medical issues as a result of Williams Syndrome, including heart and kidney disease. Jacey is a miracle and a perfect joy to all of us that love her and she steals the heart of everyone that meets her.”

7.20.14 Stats

7.20 chart

7.20 graph

I know I need to get dedications started again, will tomorrow.

So Mom got this email from Julie, her 2 year old son, Jacob, also has WS. As mom would say “he is soo CAAUUttee!” Any of you that knows mom knows she would say it just like that. Here is what Julie said…”Deb, Just wanted to let you I went to YORK, PA This past weekend for the Jeep show. I had on Kevin’s Ride shirt and this older gentleman was walking by, stopped me and said ” That is brotherly love! Kevin is great for doing this but if you have met Jake you know why he did it.” I told him that our Jacob had WS as well and he told me that we were a blessed family to have such a loving child.”
How cool is that? Yes 20 miles from our house and even farther from Julie’s in a third state (she is from DE, we are from MD and this was in PA) someone recognized the shirt and knows Jacob. Of course he does, EVERYONE knows him! And the man, a total stranger says how blessed she is for having her Jacob. Definitely angles are all around.

So that was the first cool thing from Sunday.

The next cool thing… I was riding, getting close to a small town and I noticed a car on the side of the road with a couple people in it. I peeked in as I rode by, not being nosy but thought it was strange they were just sitting there, There was a mother with breasts exposed (guess that’s the most “G” rated way to say it, I would use other words if not posting here) anyway, she was holding a baby. The dad was just sitting back, I thought was just resting while the mom fed her TINY baby. Did not think any more of it until…
About a mile and a half up the road I pulled into a fire station to ask to fill up with water. They get a call and I could hear it over the loudspeaker, a lady just delivered a baby on the side of the road! They rushed out and went in the direction I had just come from!!!! HOW COOL IS THAT!!!! I was the first to see that baby from ANYONE else in the world but his/her parents. I wished I had known, not that I would have known what to do… say congrats?

Selfie... 7.20.  Easier ride today in N Cali

Selfie… 7.20. Easier ride today in N Cali

Hitch loves PB…http://youtu.be/RZdGw_S5QBg

7.18.14 Stats

7.18 chart

7.18 graph

Pretty hilly today. Taking in all the sights! I love Northern Cali. I made it to Richardson Grove State Park. Really a cool place, great cliffs to jump into a swimming hole. It is so nice here I stayed Friday and Saturday. There’s no real food to eat so loaded up on gas station food. I tell mom, its calories and that’s what I need. I should be in town by Sunday and I will eat better.

I am told the first pic is probably a medium size Redwood. Can you see Hitch on it? I know she is small but not THAT small.

Hitch and the Redwood. Can you see her?  7.18

Hitch and the Redwood. Can you see her? 7.19

Selfie 7.18

Selfie 7.18

Love Northern Cali.  7.18

Love Northern Cali. 7.17

Nothern Cali, a little hilly but worth the climbs! 7.18

Nothern Cali, a little hilly but worth the climbs! 7.18

Northern Cali 7.18.

Northern Cali 7.18.

Worth the climb!  N Cali 7.18

Worth the climb! N Cali 7.18

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7.17.14 Stats

7.17 chart

7.17 graph

Today was the longest ride since before Vegas, about 118 miles. A couple of hills but mostly flat. Justin from Warm Showers hosted in Ukiah. Again, so grateful Aunt Beth told Mom about this!

Riding through a Canyon 7.17.

Riding through a Canyon 7.17.

7.17

7.17

Sunset at Cloverdale. 20 more miles to go to get to a Warm Shower host in Ukiah.  7.17

Sunset at Cloverdale. 20 more miles to go to get to a Warm Shower host in Ukiah. 7.17

7.16.14 Stats

I have had several comments lately from Mimi, Aunt Sherry, Carol from the convention, Ms Wanda and Hoddy and Jeff who I met recently near Ventura and San Fran. Thank you all! I am glad to see that strangers are checking out the blog and learning about Williams Syndrome, that is the reason for the trip, to help people who have never heard of Williams Syndrome understand a little bit about it.
I heard everyone in the US is only 3 people away from knowing anyone else in the US, including movie stars, the president, just anyone. Yes, WS is rare, about 1 in 8,000 but when you look at the statistics, I am guessing everyone is only 1-2 people away from knowing someone with WS and maybe the family of the WS person does not even know it.
Their personalities and smiles are amazing. Just look at the video that I posted recently, thanks to Jerry Mills for creating and the WSA for the pics in it and sharing it on fb.

So today I rode from San Leandro to the subway that took us (Hitch and I) to San Fran. Hitch did not like the train (subway, whatever you want to call it). She kept jumping out of the box and running around. She has never done that before! OK, she has never been in the trailer on a train either. I met Jeff on the train to San Fran. I am glad to say he pulled up the blog, read about WS and commented. Thank you Jeff and thank you for telling others on the train the reason for the ride.

After riding around for a bit and crossing over the Golden Gate I went up to Stinson Beach. (GG should be on everyone’s bucket list!) Stayed there for a while and then rode back south to Sausalito and stayed with Mark, a warm showers host. Thank you Mark!

Today I came up to not the biggest hill I had to climb but the steepest! For the first time, I had to get off the bike and walk it up the hill for what seemed like forever but probs only 2 miles.

I heard today 2 new friends I met on the trip are having surgery in the next couple weeks. Praying for success and quick recoveries.

7.16 chart

7.16

Subway to San Fran 7.16

Subway to San Fran 7.16

Took the light rail to San Fran then rode through San Fran to get to the bridge.  Thanks for checking out the blog Jeff  for the comment! Met him on the train.

Took the light rail to San Fran then rode through San Fran to get to the bridge. Thanks for checking out the blog Jeff for the comment! Met him on the train.

The ride into San Fran! 7.16.

The ride into San Fran! 7.16.

Little foggy on the Golden Gate 7.16. Really Awesome!

Little foggy on the Golden Gate 7.16. Really Awesome!

Love this bridge

Love this bridge

7.16.14

7.16.14

Redwood trees 7.16, still 300 more miles or so to the Redwood National Forest. Cant wait!

Redwood trees 7.16, still 300 more miles or so to the Redwood National Forest. Cant wait!

7.15.14 Stats

Kind of a crazy day. I biked probably 40 miles or so but stayed in the San Leandro area. I was riding around town getting some supplies for the next couple of days and someone ran me off the road into a stop sign. I am fine, Hitch and the bike are fine, middle finger, not so good. I am icing it and will tape it to the next finger and it should be better soon. I guess if this is the worse thing that has happened in 4200 miles that’s pretty good. I have been run off a few times, in GA by a logging truck, in the Big Sur a few days ago (those people turned around to make sure I was OK and I was), and today. I can almost understand the first 2, but not today. Oh well.

So I thought I would camp tonight. Looked up a campground and was on my way. Nice ride, looked like roads back home. I didn’t look up details on the campground, yeah it is a “Family Friendly Nudist” campground. What?!?!?! Will and Natalie put me up again, thank you! Tomorrow I hope to go to San Fran and then start northward. Golden Gate is on the list!

photo 2 (13)

photo 1 (11)

Video!!!!!!

Come Join Us – Williams Syndrome Association

We would like to thank Jerry Mills, who was the opening keynote speaker at the National Convention for creating this beautiful music video.

You can also find it on YouTube here: http://youtu.be/XJUswy4VwYk

YOU HAVE TO SEE THESE AMAZING SMILES!!!

If you ever need a motivational speaker he is awesome! www.jerrymills.com