A few weeks ago we participated in a fundraiser for our local children’s hospital with another Mito family, it was really fun and so nice to chat with another family who understands exactly how we feel.
Sharing our special moments and providing awareness on Mitochondrial Disease
A few weeks ago we participated in a fundraiser for our local children’s hospital with another Mito family, it was really fun and so nice to chat with another family who understands exactly how we feel.
Last week I had the opportunity to attend the UMDF Symposium in D.C., what an amazing experience.
The evening I arrived was registration and prep for Day on the Hill. I really had no idea what to expect. Upon arriving later than I wanted due to a delayed flight, I made it in time for the prep session in which we got a packet of information and were organized by regions of the country. A few minutes into the welcome from the staff, I started to get a sense my perception of the day was not going to be the way I had thought it would be. I opened the packet to find two pages of talking points and a group of named individuals that I would be attending meetings with along with the names of the Congress member and the person we were meeting with. I was slightly crushed at this discovery, intimidated by the information, feeling like an undereducated Mito mom for not hearing of any of these issues and the nervous that I was not going to get my agenda taken care of. I immediately was feeling defeated and sad that I left Daphne and Rich in California and was questioning my purpose. Of course I kept this to myself and just tried to listen and focus on the job at hand. I felt like a puppet of sorts for a great cause nonetheless but still not what I was expecting.
I stressed that evening trying to read and understand the information, talked to Rich and mainly tried to calm myself down.
The next day, bright and freaking early for a Californian, WITHOUT Starbucks, I got on a bus loaded with advocates headed for the Capitol. Ironically on the bus we were sitting in our group. So I was also intimidated by Dr. Boles who was in my group and a well-known and respected Mito doc in California, near me. We walked what felt like forever to the other side of the Capitol to the Hart Building and did not really prep much on what to say, grabbed some breakfast and waited to meet with Senator Feinstein’s staff member, Dr. Pete Curran. I think everyone in our group was a little nervous, it was the first time for everyone and we really didn’t know each other. We have brief introductions on how we are involved and then started with the scripted Asks. Little did I know that my mission ran alongside beautifully with the UMDF topics so I was thrilled. After our first meeting and having more confidence we realized our group was rock solid! We had a Mito Doc, a mom of a 22yr old woman who is undiagnosed, a diagnosed and legally blind 42 year old that was just impacted 1 yr prior who also used to be Chief of Staff to a Govenor in Australia and myself, a mama to a beautiful 2yr old girl. There wasn’t a question we couldn’t answer and not an angle that we couldn’t relate to. Basically you go through the asks and depending on Republican or Democrat you have different requests and ways to approach a subject. The hardest part was explaining what a Mitochondria is to those that were completely clueless and no fault to them because that was me over a year ago. Each staff aid seemed to have different knowledge on the topics and thankfully the health care reform act vote was delayed so we could still have the day. We typically had 30 minutes to give our presentation, pass out materials and answer any questions, not much time if you think about it. We were asked to snap a picture from each meeting and #dayonthehill so they could get all the pictures.
Next we met with Senator Kamala Harris’ aid. He was clueless on what a Mitochondria is, did not even introduce himself and did not seem interested in anything we had to say but for this meeting we had a lobbyist with us and thankful for this meeting that we did, she understood him and he understood her so our portion was short and sweet. I think Kamala may be too new and young to take a position on anything Mito related but I will try.
Our next appointment required us to hike back across the complex, a portion of the grounds were closed due to we think a session being held and visitors and he new fad of protesting.
We were dropped off at Garfield Circle, walked over to Hart, then to Cannon and then Rayburn. Once in the buildings the walls were long as well getting to each office. I regretted wearing heels and noticed every single staff member had flats on 😩. The underground tunnels were only available within the house and or senate but we could not take the connection between since 9/11. The heat and humidity were unreal.
The aid for MiMi Walters was nice and engaging, hopefully we can make strides with her.
Our third visit was with Congresswomen Chu herself, this was exciting as it was our first meeting with the elected official and not an aid. She was knowledgeable on Mitochondria since she had her PHD in clinical psychology so we could skip that part of our talk and just focus on the asks and a quick background on us. The personal stories seemed to hold more merit then the science or the asks, but of course you couldn’t have one without the other. She however only had 10 minutes for us. The lobbyist prepped me on what to ask her to get to my local government to make my ask a reality. I was so excited!! Maybe this is a good time to tell you what ‘my ask’ was…
Mitochondrial Diseases’ do not have a cure or treatment or an FDA approved drug. They are progressive and ultimately fatal. This has created the issue of no interest in researching the disease or creating a treatment. It would not be “profitable.” However to slow the progression of the disease and make patients feel and function to the best of their ability the Mito Cocktail is needed. This is comprised of over the counter vitamins and supplements. Since they are over the counter, insurance e companies will not pay for them, although the dosing is significantly higher than the normal recommended dosing an adult would take. So this alone makes it very expensive for families to afford. On average families pay between $500-$1,000 per month. My first thought for a ask was for these costs to hit your out-of-pocket max so a zero dollar deductible could be reached sooner for already approved tiered drugs so families could get a little relief. After hearing a few days before this the long arduous process of getting a bill in place, I decided to focus on my other and more main ask and that is to get another bill in place like the one currently in play in Massachusetts, to have Insurance companies pay for the Mito cocktail. It had been in a favorable position but has been amended a couple times and I believe this can happen in California and then make efforts for it Nationally. Dr. Boles really explained why this was worthwhile versus going for the orphan drug expense that can be at least $10,000 per month.
I was so thrilled that somebody I spoke to actually got it, most I mentioned this to looked at me like I was crazy.
The day was going great and we were on a pretty good high, until our last appointment.
It started off rough, we tried to get in early, so we didn’t have to wait 2 hours, they would not even entertain us unless the Congressman’s constituent was with us, umm what?! Not once during the day did anyone ask that.
This guy was a real special person, a very radical Republican who loved Ronald Reagan and made Trump seem normal. Almost every inch of his wall was covered in memorabilia (mostly Reagan and 3 surf boards). He told us he just turned 70 two days before. He did not let us introduce ourselves, we were late getting in and he immediately asked what we were asking for. We knew the approach to take with a Republican (cost savings) so Dr. Boles took that angle. Our first request was for him to join the Mitochondrial Disease Caucus, he shot it down before we could even finish saying the name, he said caucuses are worthless and a waist of money and he would never join, “oh great” I thought. Then we quickly mentioned the NIH and DOD efforts just to highlight, asked him to lead the NIH letter and he questioned us hard about it reallocation of funds for NIH and we explained it was not for that but just inclusion of he Mito community into the studies. Next came the Medical Nutrition Equity Act and my specific ask and he shot those down, all of this talking was by Dr. Boles and his actual constituent was another Doc and she was silent in awe of his behavior. He said he would never sign a bill that told Insurance companies they had to pay for something but would rather pay the $10,000 a month and have Medicare or medical pay for it, we were so frustrated and confused by his behavior. He complained about government insurance and how hey had to switch to Obama care and it was expensive out-of-pocket for him, I was dying. Then he told a story about when his daughter was 9yr old got Leukemia and went through Chemo and how much he paid and not to worry she was cured and was going to be fine.
I was seriously about to jump out of my seat in anger and could see the jaws on the floor around me and pulled out my phone, got my latest family picture up and interrupted the conversation and said “I am so grateful that your daughter was able to get treatment and that there is an FDA approved drug for her, let me introduce you to my 2yr old daughter who has a very rare Mitochondrial disease that has no cure, no treatment and is progressive and fatal and Insurance does not pay for her.” I am pretty sure my spiel went on a little more but it has taken me this long to cool down. I did start to breakdown but sucked it up and finished. I did not breakout a picture of Daphne all day, the others were respectful, this guy was not. The reality is though we will likely need him and I can’t burn that bridge. We did have to excuse ourselves from his office to catch the bus and that was after almost 45 minutes, I think in one way or another we made an impression. He made my glass of wine taste even better that night 🍷. I had to give him some endearing comment about his similarity to a certain guy in his office, he loved it 😖.
Oh and the picture had to be from the waist up per his young wife so his belly did not show.
The rest of the conference was about networking and attending sessions which was great. I need to follow-up with everyone I talked to yet and will but also trying to manage my inbox from work 🤦🏼♀️.
Every two years UMDF goes to the Capitol, if anyone is interested in joining me, just let me know.
I can hardly believe that Adelaide just finished 3rd grade but this sweet, sassy, independent and amazing little lady is officially a 4th grader.
The last day of school resulted in me picking her up early from after school care per her request and then getting begged by her friend to bring her home as well which gave me an excuse to get them Snow 2 Go (my guilty summer pleasure of the most delicious shaved ice I have ever had).
The first movie in the park (outdoors on a big screen with snacks and kids running around everywhere) luckily it was Daphne’s favorite movie and where she was a little unsure at first she ended the night in all smiles, and stomping her foot to the music.
Today we surprised Rich with Deep Sea Fishing with a very early wake up at 4am then brunch at one of our favorite spots afterwards.
Daphne didn’t like two of the guests on the boat but luckily fell asleep and missed he entire fishing experience and woke up moments before we docked. Thankful she was happy for the boat ride and brunch!
I would have loved to have slept on that boat, rocking waves, the sounds of the waves and the cool salty air, yes please! That girl was in heaven!
We did not catch any fish we could keep but Rich an Adelaide did both catch a couple Sculpin. Did you know the fins are toxic if they hit you, as the skipper said not toxic like your going to die but it’s going to hurt really bad!
Everyone was tired except Daphne and took a nap when we got home.
I hope all the dads out there had a great day!
After 3 tough months battling the insurance company to continue coverage for Daphne’s medicine (N-Acetyl-Cysteine) that may partially reverse her disease…
Excitement is an understatement 🙌🏻
My last update on this topic was winning the appeal to get a 3 month courteous fill to give me time to fight them, many hours on the phone with various agents, trying to figure out the right form and process, trying to get the doctors office to do their part because in the end I can do all the work except complete the final paperwork, so annoying but thankful they stuck it through with me and I will be sending them a sweet 🎂 treat for being so sweet (a little exaggerated 🙄), but my dad always taught me “you attract more bees with honey”!
A special shout out to Paula at the insurance company. I fell in love with the first agent I made an appeal with several months ago but Paula took it to a whole new level and really cared and took ownership in helping me.
You may think it’s easy but seriously some people and processes are setup just to be difficult just to make you quit, I swear.
Follow me for a minute here….
Believe me it’s true, in my own job I see it and even play off it ( sorry not sorry sometimes) so that is just the case in other careers as well.
One thing that has always given me the edge to not giving up are those people that say “Who’s going to own it? Are you going to own it?” They are saying this knowing good and well they should be the ones owning it but you being the better person, steps up and says, yes I will.
In the back of your head your doing this, because 1. You’re so good at it 😜, 2. You will learn valuable lessons along the way, 3. At some point in the future it will benefit you.
So thank you to all those who have done this. You have gotten me to this point. Thank you for teaching me how to help others want to do this as well. My rule in dealing with the insurance folks is to be nice, courteous, understanding, listen, be realistic in what I am asking for and take ownership of the issue. Paula did all of those things and more. She called me everyday when she said she would, to check on the status and she made the final step to get this approved happen! Paula my dear, you have just made my dreams for Advocacy for Daphne’s Lamp a reality.
I think this shirt was made for me and every other Mito mama I have met!
***It’s not my most glamorous picture but I will be honest I am usually in pajamas by 6pm and tonight squirmy little Daphne would not cooperate very well but that’s my life.
This is just the beginning, I am going to D.C to meet with Congress June 29th and I will be pushing for the next big thing.
Until I have to appeal again in another year, I am making steps to make this fight even easier, stay tuned for those details.
This is for my daughter Daphne and what the future of those involved in with #daphneslamp will look like. I don’t take NO for an answer and I will put up one hell of a fight, so get ready. Get on board with the movement it’s going to be BIG!
One thankful and Happy Mama tonight 😊
I can’t help but starting off this post with..
This time last year I NEVER thought we would see this day.
The day before Daphne’s 1st Birthday we were in San Diego visiting one of the ‘IT’ doctors in Mito who delivered crushing and heartbreaking news to us.
As hard as it was I was determined to celebrate Daphne’s 1st Birthday, not knowing if she would live to see another one.
This year has been the hardest year of my life. I have been through a lot in my 34 years, more than most and trust me that is not bragging I wish it was less but it has made me who I am now and has taught me many valuable lessons, the most important for our current life, is how to fight for what you believe in, speak the truth and the facts and the rest will fall in line. A saying that I have been saying for years now in my job (a world of disbelieving men that I constantly have to battle with) “Prove me wrong, it will only benefit you if I am wrong.” My intuition and knowledge is usually spot on.
Back to the Birthday Girl.
Her day looked like this:
She woke, in bed with Rich and I angry because she missed her 1:30am feed so she took 6 ounces.
Got dressed in her Unicorn 🦄 outfit and headed to PT (I made her skirt)
Then breakfast in the car with me, a mini photo sesh waiting for her doctor’s appointment (the light was just beautiful, no filters here).
Can you see the 2 year old behavior 😂
Then at the doctors office hopefully we got the answer to all the sleepless nights….Sinus Infection.
Poor kid but hopefully the meds work and she gets back to her. She has been running a low grade temp almost everyday, fussy, not eating well, NOT sleeping well at night and congested but not in her lungs for weeks so this is the next step. It has been over 2 months since she was on an antibiotic and that is a pretty big deal!
Then Daphne went to her babysitter who greeted her singing Happy Birthday, she was all smiles.
In the afternoon she had a followup at her Neuro-Opthamologist, poor kid got dilated.
We rounded out the evening with dinner at IHOP and presents. Her favorite is her Mini mouse 4 wheeler from Adelaide.
As I write this I remember we forgot to sing Happy Birthday, light her candles, eat cake and give her, her trampoline. Tomorrow will be a little continuation and a picture in front of the Unicorn photo wall I made from Pinterest (forgot that too and it’s been up since last week 🤦🏼♀️)
A friend helped decorate this cake which she did great but it still was a Pinterest fail and moments after I put it back in the fridge it fell over! I tried!
What it was supposed to look like:
What it looked like 🙃
She gets to start tomorrow morning off with bloodwork😢.
The life of a Mito baby 🙁
This sweet and spicy girl is loved more than she will ever know. I spent most of the day crying yesterday and cried myself to sleep, not sure if it was over the thought of her turning 2, that she has lived to see 2, that she is getting closer to being identified as special needs/not ignorantly identified as a baby that is much younger than what she is or the thought of not having her one day (something that haunts me daily 😔), I am pretty sure it was all of the above.
I keep telling myself to live in the moment and take it all in. I do, I really do but it’s time when I am rocking her and she stares up at me and just gives me that sweet little rotten look but also that look of being so pleased to hear me singing or humming that I just fall apart. I will never regret one tear I shed over her or Adelaide but geesh I thought a year later things would be a little easier, a little less painful but it seems like just yesterday it all happened.
xoxo from one grateful but heartbroken mama
Both of my girls are dare devils, they are going to make a mama grey
I try to be so good about writing but we have been busy these past few weeks.
Little Miss Daphne was sick and has been sleeping with us for weeks off an on because of the illnesses, I am ok with that when she does not feel well so I can monitor her temp, her cough and oh yeah when she barfs in our bed 🤢
There was a nasty virus going around with a high temp lasting for days and that just piggy backed on her already wheezy cough which was being treated with albuterol. She was a mess! Thankful my mom was here, the night before my mom left however Daphne’s temp got up to 103.8 and she was on Tylenol, Motrin and just got out of a tepid bath so at that point I text our doc (by the way we are back with our fav doc, thank god!) and she had us up the dose to 5ml of each and that did the trick. That was a big jump from what the charts say to dose her but you do what you gotta do.
Sleep training this girl after weeks of this have been very challenging 😴.
My girls have been so much fun in the past weeks and as I wrote down all the memories I wanted to share I thought that is too much for one post so I may trickle them out.
My mom bought Adelaide this Chillbo and it’s ridiculous, too big and the concept does not work. Enjoy laughing at us.
I finally found the energy to finish the IRS filing for Daphne’s Lamp, it was a pain in the butt. But I found a since of relief in the meaning of this necklace I wore on the day I mailed it.
We finally had a warm couple weeks to open the water slide
We go to this place near us and it’s really great for kids and picky eaters. They have these adorable little ice cream cones. Daphne does not like cold or ice cream, it was the cutest thing when she held her cone and ate it!
One of the weeks our babysitter was closed we had two college girls watch Daphne and she LOVED them, this was huge because if we get a babysitter it’s typically after she is in bed so to think about daytime with her, I was a nervous wreck. I am lucky enough to work close to home so I stay to feed her breakfast, came home for lunch everyday and was home rather early each day just to make sure all was going well. She watched her favorite movie Sing a few too many times that week but learned to Dance!
What baby doesn’t like to play in the Tupperware cabinet?! Well Daphne had not been able to because of her mobility issues but this day she was able and boy did she make a mess and have a great time!
Adelaide has finished phase 1 of her braces and she is so excited to not have metal in her mouth, I am dreading a retainer with the absent minded professor because she went through 3 the first time she had a retainer 😕
A year ago she lost the use of her hands, arms and rolling over.
Now she can scoot backwards and pivot!
Go baby, GO!
Adelaide had a school project to learn about a local City so the whole family went and helped.
Life is so busy that often we forget to explore all that we have around us.
It was so much fun taking the train to San Juan Capistrano, which only took 12 minutes versus driving which can be a crap shoot depending on traffic and accidents. And little Daph was happier being held then in a car seat 🙃.
We spent a lot of time at the mission and learned that there are 21 missions in California, the Swallows that used to only nest in SJC now go to other places as well because they can and much more.
This was Daphne’s 1st train ride! Adelaide has taken the train to several sporting events and loves it, especially the cafe car!
Daphne’s surgery went well, so Thank You for all your thoughts and Prayers!
She was quite pissed at the Nursing staff yesterday for touching her even if it was just to put an ID band on her, so you can imagine when they had to take blood for testing it did not go well.
All the Pre-OP precautions takes longer than the actual surgery which was less than 10 minutes.
In the recovery, Daphne was just as mad if not even more so since we were not with her when she woke up but we were very soon after. She took a bottle, ate some oatmeal and banana and we were discharged by 10am.
I hope that the tubes work and she can be infection free!
Pre- Surgery Photo