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

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!


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.

DSC_0137DSC_0149DSC_0313DSC_0293DSC_0269DSC_0169DSC_0155DSC_0154IMG_7346IMG_7349IMG_7364IMG_7368IMG_7370IMG_7408IMG_7405IMG_7402IMG_7394IMG_7386IMG_7378IMG_7410IMG_7414IMG_7449IMG_7430IMG_7463IMG_7473IMG_7496IMG_7489IMG_7484IMG_7480pic fail

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.


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.


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



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

Charlie Gard

There is this little boy in the U.K. Who has a rare, 1 of 16 in the world, Mitochondrial Disease

…just like Daphne

Can I please just write, what freaking Mitochondrial Disease is not rare?!  I mean my god, I have never heard of it, nor have any of our family or friends and the chances are just hugely out of this world of getting two mutated genes or even one in Charlie’s case, so yeah they are all freaking rare.  Let’s stop saying it now.  Before I felt pride saying it, now seeing it thrown in our face justifying inadequacy for treatment and science, it now pisses me off.

I digress sometimes, sorry.

They say he has had brain damage

…just like Daphne

They say there is no cure, no treatment and just enjoy your time

…just like Daphne

His brain damage may be irreversible 

…just like Daphne

I have known about this family since last fall, UMDF made a post to pray for a few people.  This little guy was one along with another baby that has since passed.  I have donated to their cause, shared the news and thought about them daily.

Only recently has Charlie grown to International awareness and where I am pleased with the publicity for the disease, it makes me sick for this sweet baby and his family.

A family with their first child is supposed to enjoy all the firsts in their child’s 1st year.  Sleepless nights, giggles, explosive diapers, first solids, those wobbly legs when they take their first steps and the sweet sound of their first words.

Instead these parents get to stare at their sweet boy in a hospital room since 8 weeks of age, missing all the firsts, except a rooftop picnic that hospital staff gave them, and having sleepless nights over fighting the most horrific battle to do nothing other than keep this sweet baby alive. 

I can’t even believe a situation of this magnitude, rests in the hands of government officials.  It’s disgusting and undeserving.  Government officials are not medical experts and they are not Charlie’s parents, who are the only ones that should be able to decide the course of treatment.

In this case the local doctors and hospital think that Charlie should die and not give him a potentially life saving therapy or even the Mito Cocktail.  Unbelievable. 

At this stage it is not about what will work but ego.  Every now and then we have to take a slice of humble pie and eat it, I sure hope that is how this ends.

There are rumors he is suffering, his suction and intubation are painful, come FREAKING on Great Ormond Street Hospital, I see patients getting suctioned in the doctors waiting rooms waiting for an Ear appointment, this clearly was a regular occurrence for this particular family and I don’t think they are in pain.  If you tried to put in or remove the intubation tube without sedative I bet it would be painful, like catheter painful (but docs do that even to little babies without sedation) but having a tube in that does not move, and so many others have been conscious and have been fine and not in pain and even talking.  Try something else.

Unfortunately with these kiddos they build up a pain tolerance, even to a simple blood draw.  It’s sad to see as a parent but a reality for the life they live, constantly being tested and having procedures. 

It seems the highest of high people, Trump and the Pope, to name a couple all want to help Charlie and bring him to their countries, but yet the U.K. will not release him.  It doesn’t make sense except for ego.  We all know that the legal system and this hospitals credibility would be disregarded for all future endeavors.

What I am sad to see is something as simple as two parents caring so deeply and wanting nothing but the best for their child, come to this.  I don’t want to see this become the norm but do not blame the parents at all, they had no other option but to bring attention to it in a last ditch effort to save their baby.

These are some of the headlines today, it is unclear of the judges intent for the next few days but he may be asking for the U.S. doccto come examine him.  I pray that god is with all involved in this case.  This baby deserves nothing but a CHANCE!

I still have hope and faith that this sweet baby is going to prevail.

There is a bill special for this family that you can call your local officials to vote on.  I can walk you through the steps of what to do and how so just let me know.

Please keep up the thoughts and prayers until Charlie is in the U. S.

xoxo desiree

4th of July 

Nothing like arriving at 11pm to waking at 6am for  5k and inviting some of Adelaide’s friends to run with me.

Let’s be real I wanted them to run with me so I had an excuse to walk 😂.

I was pushing Daphne and Rich was running for time.

We stayed cool in the shade for the parade and then hung with friends for a little and had an early night at home and saw some fireworks a from our guest room.  A great 4th since we didn’t have Adelaide 🙁.