It is with a heavy heart that we remember Ruud. Rudd was a member of our international dada2 community. His fight and battle against dada2 began several years ago. Discovered oceans away, his story was an important one.

His legacy lives on.

Two weeks ago, Ruud’s memory was shared during our international gathering. Prior to COVID, our families were lucky enough to sit next to one another during a dada2 conference to share our experiences. Continents separate us, but our stories connected us as parents and families.

The dada2 community is at a loss without you Ruud. From our dada2 family to yours, we wanted you to know that we are thinking of you.

We aim to raise awareness and a cure.

Be brave. Stay strong.

Seven years ago, we experienced the life-altering diagnosis day. The day we sought for three years and the day that let us know the uphill battle we would face together as a family to support our toddler.

Two years into our journey, we learned about the dada2 foundation. Like us, they were working towards advocacy, awareness, and a cure for kids like Kelsey around the globe.

This weekend, we will join families from 28 countries to share stories and learn from one another. Hope is also evident when we come together because the future is bright when you know the depth of our community and the many faces of dada2 patients.

We continue to learn, grow, and stay brave, together.

#teamjulia

Day 19 for Jules and another sleepless night. However, the strength and bravery she continues to disaply is inspiring.

Julia, Day 19, 4/26/21

“Life is so short and it is so unexpected.

Remember to love the ones who love you and for the ones who don’t love them too ..they need it most.

This life is so precious and it is meant to be celebrated. It’s not meant to be lived miserably or fast.

Love the life you live and if there’s something you don’t love about it…change it. Never again will I take this life, these people, or these moments for granted. It’s hard right now but this is truly the good life.

We are all so lucky to have received the gift of life and even though it’s hard for me right now it is only temporary.

So after this hospital, I will appreciate life more I’ll live for the good parts and breeze through the bad parts for I now know things could always be worse. God chose me to get two shots at life I will not disappoint him. So today do something that makes your soul happy and retire from anything that does not because most of us only get one life.

One shot and one chance to do everything that makes us happy don’t take advantage of that. Life is beautiful it may not always be perfect but it is what you make of it so do your best to make it a good one.

Never stop being a good person full of good vibes even when the world gives you a million reasons not to be. Have a good day everyone if no one told you yet today

I love you and you are important.”

Keep fighting Jules. You are important and we love you.

Another week of worry and then great news came. Julia was able to remove her vent. Though the battle ahead is long, the warrior in Jules is strong.

Continue to pray, hope, and keep the positive vibes coming.

All week, while I thought of Julia, her family, and her battle, I heard one of my poems. It has also served as a source of strength, and I thought that it was appropriate to share with all today.

Stay brave and strong!

“Hope” is the thing with feathers

BY EMILY DICKINSON

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –

And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –

I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.

This week, a dear friend and beautiful family have been faced with a great struggle. A young and vibrant young woman is facing a tough battle after a car accident rocked her world. Her family is strong and she is one tough cookie.

Her battle is one I wanted to share because she has always supported our Kelsey and her battle.

Julia’s road is different. Julia needs our prayers. Julia needs our well wishes. Julia needs our positive vibes. Please send them her way.

#TeamJulia #You’veGotThis #Brave

Jules, keep fighting. You give brave a new name.

It’s been more than a year since Brave took on a new meaning for our family. Brave became the word Kelsey’s brother placed on headbands and has worn faithfully for over a year. Before the pandemic came, through the pandemic, and today.

Brave has become a favorite word for us.

We receveid these bracelets. They once again remind us to be Brave, have hope, and feel grateful.

Thank you to all of our supporters, those who think of us, and all who show bravery today and every day. We see you.

Below is a letter that was anonymously written to a family that lost their dream home in the San Diego fires.  The letter was taped to a shovel in their front yard and the author GB remains unknown.  It brought comfort to the homeowners. As we arrive at the year mark on a global pandemic, the words bring a sense of comfort here, too. 

We cannot escape the tragedies that arise in our lives. We can search for a reason and ask – why? Maybe we could hold others at fault or imagine what life would be had this not happened, but perhaps what defines our character is not our struggles but how well we meet them and rise up after getting knocked down.

Faith will overcome fears, doubt and insecurities. Sometimes in life we don’t recognize how strong we actually are until we are faced with a great tragedy in our life. This calamity we face today will help develop the strength and fortitude we need for tomorrow.

Losing everything we own is sad, but the things we own do not diminish who we are inside. Sometimes the worst situation brings out the best in us and others.

When you put together a jigsaw puzzle made of hundreds of pieces, you put it together one piece at a time. No one can go back and change what has happened, but we can all start today and make a new tomorrow, one shovel at a time, one day at a time. 

GB

Imagine that all of a sudden, your world stops.

Your family’s focus becomes a single, life-threatening topic. Home becomes the only place that is safe or manageable. Your physician is on speed dial. Doctors’ offices are the only place you have been in a while. You monitor symptoms, wondering if one will lead to more. You think, “This will pass soon,” but weeks, months, even years drag on. Your only hope for change is out of your control, resting with specialists. Questions linger.

This isn’t COVID-19. This is everyday life living with a rare disease. But having lived in a pandemic, we can all now empathize…

Collaborative approach used for rare diseases can help us defeat COVID-19

Families, like ours, working together for a better tomorrow.