CA Mito Bill

Sorry for the long break……

I have been busy working, mommin’ and working Daphne’s Lamp.

Daphne’s Lamp received our 501(c)3 status in October.

I have been working with a Senator’s office to see if they will write a bill requiring insurance companies to pay for the Mito Cocktail.

I would appreciate your signature and sharing with friends. We need to make a big presence for this Senator and in California to let them know this is needed!

Please take 30 seconds to sign this petition to help Daphne and other Mito patients get access to life changing therapies.

You do not have to be a California resident to sign it. There is a bill in KY, the only state that covers the Mito Cocktail, the Senator’s office I have been working with has been quiet and the bill decision period is in February and so much more work is needed to make this happen.

Let’s raise awareness to Dr. Richard Pan and Governor Brown

Let’s show the world that Mito lives matter!

Thank you!

#CAMitoBill #senatorpan #governorbrown

https://www.thepetitionsite.com/388/757/414/ca-mito-bill/?taf_id=46283729&cid=twitter#bbfb=786280387

Family Moments

Daphne has loved standing a lot lately, in this picture she is watching adelaide sing a song at the computer. She sure loves Adelaide!

Daphne has loved giving herself bites of food that we prepare for her, of course we clap and make a big deal out of it so that is probably what she likes more but I’ll do whatever to get her to do it!

Daphne loves the beach, I me we all do, who doesn’t?! This day was especially nice as it was over 100 degrees at our house so the beach was in the 90s and the water that normally feels like ice water was so refreshing and we all got in all the way up to our necks and basically could only be comfortable in the water. This was one of the best beach days ever!

There is a great non-profit called Bella’s Bumbas and they provide these bumbo wheelchairs at no cost to the customer except for shipping. Daphne loves her wheels and the ability to get around, of course she has also discovered leaning forward and scaring us and her ability to chew on the wheel 🤢.

We also found this local gym for kids with sensory issues (all the kids loved it).

Little Bunny Foo Foo

The day we got back from our RV trip I surprised Adelaide with a sweet little baby bunny named Chester!

He is about 9 months old and was neutered shortly after arriving at our house which caused some issues with infection then some urine issues but now things are all smooth and we found food that he likes and is good for him too!

He loves to run free in Adelaide’s room and jump around on her bed while she sleeps 🐰

Family RV Roadtrip

Let me start off by saying this was a trip of a lifetime. It was so much fun!

Our family shared so many firsts together, saw parts of the country we have never seen and may never see again.

We had 5 nights and 6 days to drive the California Coast to Oregon and back with several stops along the way. Some thought we were crazy and needed more time but we knew the route and had our destinations set so we were determined.

One of the most difficult parts of the trip was getting everything packed into my SUV so we could drive to the RV rental place 30 miles away, there was no turning back or added hours onto our first day would be inevitable. Thankfully we packed as much as we could and already started a Walmart list because certain things would not fit like water and ice and a few other staples.

This is not the best picture but we were packed in tight, my feet are resting on a pile of stuff and the space below Daphne is packed full. I am glad it wasn’t too far away.

We thought picking up the RV would be relatively fast….WRONG! We had to wait, apparently it was a busy pick-up day, there was this nearly once in a lifetime event about to happen, oh yeah the total eclipse and then we had to go through like a 2hr walk through, I was dying towards the end and started to reply, I just want to load this thing and go and then I started with I know that, I went RVing with my grandparents (maybe I was little but I remember falling off the top bunk while my grandfather was driving, kids don’t do that), so certainly I could figure out how to run the generator and flush the toilet with sanitizing stuff after we emptied the tank 😬.

Finally, we were on our way and Rich was getting a feel for the old girl.

We were San Francisco bound!

After a stop at Walmart and gas, several orchards (amazingly beautiful) and a nasty meat farm ( so sad and smelly) I just wanted to rescue all of those cows, nothing but piles of poop and brown mounds of yuck, not a single blade of grass 😞.

Know where your beef comes from!

Just before dark we arrived at the Candkestick RV park, apparently across from the old Candlestick Stadium, so it was just a parking lot but they had showers and just one day of driving had me craving a shower.

We, well mostly my little brother Harrison cooked a bunch of meals before we left so we did not have to eat out all the time, so that’s what we did for our first night.

Rich took a walk, I think he was already feeling cramped in the small space and found a family of raccoons in the park.

Daphne loved facing forward and seeing all the cars, we called her a little co-pilot.

We explored as much of San Francisco in one day as we could.  We started in Chinatown, then walked up the very steep hills, trying to get a cable car to the wharf district but they were far too full so after 45 minutes of waiting we decided to walk it.

After the wharf we decided to walk to the Golden Gate Bridge and pit stop at the house where Full House was filmed.  Harrison took Adelaide and I believe it was a big disappointment but Daphne was snoozing so we were enjoying the 3 mile walk to the bridge when Daphne woke from the cool breeze so we ubered to the bridge, Daphne’s 1st Uber ride :).

The bridge was spectacular!

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Next stop was Glass Beach which was a big disappointment and the switch back mountains were not handled well in an RV and the pit stop was 2 1/2 hours out of our way but we can say we did it.

After Glass Beach we drove until we reached the Redwoods and if I had it all to do over again I would spend at least a week in the redwoods.  Oh my gosh it was so nice and peaceful and BEAUTIFUL.  Everyone should have the redwoods on their bucket list.

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This is Rich making fun of Adelaide and I for stopping and admiring everything and taking pictures!

A story we laughed about and still do is the story from the campground security guard about the hobos/travelers/transients that travel to that area to grow weed or trim the plants for farmers, they also try to break into the campground at night and steal or use the amenities.  He even went as far as describing what a hobo looks like, it it a person looking rough with a backpack and a flannel shirt.  So funny.

After the Redwoods was another 2 1/2 hour trek to Crater Lake.  Unfortunately there were several wildfires around so part of the roads in and out were closed and the visibility was horrible.  We will just have to go back when it is clear, I bet it is gorgeous.

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Finally to wrap-up our trip we went to Oregon for the total Eclipse, the night before the big day we stayed in Eugene and then drove to Salem and met Rich’s cousin Chris and his girlfriend Alexis at a sweet little home of a vineyard owner.  We sipped on his brunch sangria and watched quietly as the entire event happened.  It did get darker, not pitch black, the wind picked up the birds started singing and it got cooler.  to the naked eye the sun looked the same,  but with the glasses it was amazing.  We caught a few pictures.

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I hope you have enjoyed our pictures and maybe even inspired you to take a trip like this someday.

xoxo

Desiree

Wow, its been awhile

Wow, its been awhile but I assure you it has been about relaxing and laying around sipping wine with my feet up, I wish!

We finally got to meet our AZ friends and took them to the beach for the boys first time. Daphne loved it but her friend Preston did not, lol!

Then we had our San Fran family visit and Daphne loved their stickers (aka tattoos)

Next I finally caught her new skill on Camera…clapping 👏🏻

Then we rescued a dog we found lost in the streets and reunited her with her owner

Then Daphne discovered this is her favorite way to get in the car and doesn't care how much of a rush we are in 🤦🏼‍♀️

Then we had a little mommy and Daphne time while the rest of the family was on the east coast

Finally after the longest MONTH ever, Adelaide came home

Last night we went to the local art show called Sawdust, its always great with food, music and local artisans!

It's been a great month for our family but unfortunately sweet little Charlie Gard passed away July 28th, one week shy of his 1st Birthday as his parents stopped their fight once they learned Charlie's muscles had been affected beyond a point of repair from his Mitochondrial Disease.

This was and will continue to be a very hard time for his family and all in the world who's hearts he touched.

I wish his parents strength to get through these times, especially tomorrow when he would have turned 1 year old.

Rest In Peace sweet boy, your legacy will live on through all fighting in Mito!

xoxo desiree