Show Your Hope!

Every 30 minutes, a child is born who will develop a
mitochondrial disease by age 10.

Each year, 1000 to 4000 children in the United states are born with a
mitochondrial disease.

80% of children diagnosed will not live to adulthood.

If this were your child….would this statistic be acceptable to you?????

Please take a moment to listen to this song and watch the video I created to honor all of the children who did not live to adulthood.

While adults are affected by this disease, TODAY….I am remembering the children.

Today I light a candle in memory of all of the “Little Birds” who have lost their battle with Mitochondrial Disease.

“We are, each of us angels with only one wing; and we can only fly by embracing one another.”

This song comes from a very special place in my heart.

We all are “Little Birds” in our own right. Some of us have had years to grow our wings, some of us grew our wings before we were ready to let them go…and still others have not yet discovered their wings or even tried to fly.

When I decided to create a video for this song, I reached out to several families who had lost a loved one to Mitochondrial Disease. Each family graciously allowed me share with you all a very personal look into the lives of their precious ones. It is an honor that I will cherish and I can only hope that I have been able to relay to you just how much each of these children have changed our world before they left their earthly nests.

Emma Dalton, Eithene Hilliard, Brittany Wilkinson, Isabella (Ella) Magee, Bridget & Dominic Nuccitelli, Parker Harmon, James McKay, Maggie Agnew, Alexis Roung, Ellie Wilkinson, and Madison Grantham – and every other “Little Bird” who has ‘journeyed to the shore’ – each of your lives have shined a beacon of light into our hearts. You will forever live on in spirit carried on the wings of our love.  It is today….and EVERY day that I will remember you, and all of those who have fought and lost their battle to Mitochondrial Disease.

I will continue to fight for a cure for Mitochondrial Disease….this is why I am doing the Show of Hope with Chelsea. Please consider supporting the event – you can either buy tickets online or simply make a secure donation towards the event.

One life lost is too many……

Never Forget

To learn more about Mitochondrial Disease, please visit: www.umdf.org

Love and Light,

Stefani

I was FINALLY discharged home yesterday afternoon.  Needless to say, there was a good 24 hours that were pretty scary for me there – but I am happy to report that I am feeling much better.  My PICC line has already proved to be helpful in blood draws and hydration – but I am honestly quite worried about the risk of infection – so I hope to not need it for too long…fingers crossed.

I came home anticipating a quiet and simple transition back to ‘home life’  and my ‘welcome home’ present was that Sasha was sick.  It’s looking like another sinus infection – so we’ll be heading to the doctors tomorrow morning.  She made it 7 full school days before getting sick….looks like it’s going to be an interesting year.

In other news – 2 of my 3 ‘Mito Sisters’ are out of the hospital (yay!).  I’m really praying that things get better soon for Chelsea – she was moved out of the ICU earlier this week and is awaiting word on what the next step is.

We did, however, make it out to see her early today….it was a nice (unfortunately too quick) visit.

Our Mito Gang: Sarah, Chelsea, Mighty Matthew, Me, Beast, and True

Chelsea's "Med Grid" - Imagine having to pull that thing around everywhere you go?

It’s a busy week ahead……There’s only 5 more days until Show of Hope!!!!  I am really excited for the event and am hoping that my friends and family are able to make it out to support an event that is so near and dear to my heart.

Tickets are on sale NOW – click HERE to purchase tickets! Can’t make it that night?  You can make a secure donation online to support this event by clicking HERE!

DID YOU KNOW?????????

Today marks the start of Mitochondrial Disease Awareness Week.

What Mitochondrial Disease Is…

Many people don’t know what Mitochondrial Disease is…so I will be posting daily here all week to try to help you understand this disease more….

“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.”  (Courtesy of UMDF)

Please take the time to watch the above video created a few years ago by a friend…it’s a pretty accurate and sobering description of this disease.

Love and Light,

Stefani

There really is NO PLACE LIKE HOME…and that is exactly where I am NOT updating you from.   The good news is that 2 of the other 3 ‘Mito Sisters” have been discharged from the hospital.  We need to devise an escape plan to get Chelsea out of Mass General and me out of Lowell General and life will be as it should be!  When I was admitted on Saturday, I didn’t think that I’d have to stay this long – I figured it was a routine ‘tank up’ ER stay (usually last 2 days tops), but my body had other plans.

Usually my saving grace...

My blood pressures went extremely low (79/49…and for those who don’t know, they don’t like blood pressures that are below 80’s/50’s….just not a great place to be) despite being on constant IV fluids since Friday (at home – and that should have bolstered my blood pressures up – and always has in the past) and my blood sugars had been hovering in the low 80’s and falling into the 70’s with only a little time off the IV dextrose drip (for most, this is an okay range, but it has been well documented that I am symptomatic in the 80’s and 70’s). This did not give the hospitalist the warm fuzzies and it continued to be the only hindrance to my discharge since Monday.  The doctor tried 3 times to take me off the Dextrose and Normal Saline – that was a huge FAIL the first two times) – it was successful for a good while (my sugars dropped twice below the ‘acceptable’ parameters’ but I managed to convince them that we could check again in a few minutes to see what it was doing and, if we went up, we’d leave it (my IV had blown and I didn’t want to get stuck again).  My morning was pretty good – other than some crazy shortness of breath (pressure too) early this morning  – everything *except* my blood sugars was cooperating nicely.  At about 11 a.m., we hit the third time they dropped, and I got so ill from it that the doctor began the discussion again about having a PICC line or a Mid-line placed.  I was not thrilled with either of these interventions as they both pose significant risks, but everyone felt this was the best thing for me at this point.  The plan was to get the line placed, get an x ray to confirm placement and then go home (discharge planning had already occurred).

I can’t even tell you how freaked out I was to get it placed, I’m not a fan of ANY medical intervention (pills, procedures…just the one thing that sends me right off the edge), but the lady did a great job and the PICC is in, phew!  I developed significant shortness of breath again just after the procedure and it continued for more than an hour – all while my O2 sats were stable and my heart rate was low (so not anxiety…heck the hard part was done).  After a while, they decided to check vitals – my temp was just about 100.0 – and for those who scoff at this, my temperature averages  97.5 – and that’s what they’ve seen here – maybe a few points over the 98.0 mark in the past 72 hours, but that’s it). Then, they got me up (nature calls you know!) and my heart rate more than doubled – to the point that the charge nurse (who is fabulous) brought me back to the bed (the plan was to go the bathroom and then do a short walk to watch my O2 sats).  She went out of the room and returned 5 minutes later and said, “Hon, you’re not going home, sorry – but you just aren’t okay enough to go home tonight….”

During that moment, there was this very aggressive “REALLY?” and some other choice words roaring in my head…..and I just wanted to cry.  I’m so frustrated because I have SO much to do to get ready for Show of Hope (and my other partner in crime who is running this event is in the same boat as me in MGH) – so if any of my local friends/family can help with this, we really would appreciate any and all help (putting out fliers, trying to collect raffle items) that we can get….just shoot an email to showofhope@aol.com

SO…that’s it.  My arm is sore, I’m bummed out and bored out of my skull.  The ONLY bright spot in this is that Bob is mastering the CD tonight and he will be sending me mixed versions for approval as he goes along….so I have SOMETHING to look forward to (since going home, seeing my kids and the rest of my family, and sleeping in my bed are not options right now).

Okay…totally done my pity party…I just needed to whine a bit.  I know it could be worse and I know that this is nothing compared to what a lot of people I know go through, but for me – right now – the timing of this couldn’t be worse.   This Mito thing sucks…..big time.  

Friends ask me what they can do to help.  Do you want to know what will help me?  Come to Show of Hope…..if you can’t come, make a donation towards the Show of Hope from our secure donation page….tell everyone you know about Show of Hope and tell them they can purchase tickets online (and be entered into a special raffle exclusive to online ticket purchasers)…help me raise money to find a cure for this disease – it robs SO many of SO much.

Thanks for letting me have my Negative Nancy Pants on…..I’m sending them home with Ralph to put in the laundry.   😉

Over and out….
A very Stir Crazy Stefani