Warrior Julia

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.

Brave

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.

Brighter Tomorrow

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

Rare Disease Day

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

The DADA2 Community: Working Together

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

dada2 History

Honoring Dr. Kastner

When Kelsey was an infant, we were wrought with worry, concern, and fear. A few years into our journey, we were fortunate enough to meet Dr. Dan Kastner at the National Institute of Health.

Hope followed and years later, a diagnosis. Dr. Kastner was thoughtful, eloquent, and provided us with much-needed answers. We learned this week that Dr. Kastner was awarded the Crafoord Prize, in recognition of his work that led him to dada2.

We thank you for your work and cannot truly express the gratitude that must be felt by all of the families and patients you have helped throughout the years.

https://edition.cnn.com/2021/02/01/health/daniel-kastner-rare-diseases-autoinflammatory-scn/index.html?fbclid=IwAR2_f5-tDAwj2FBnsvtFT9gBywW0qporPFBjfoq5CKtAFRQCrT7Pb2DrsGY

Wicked Good

Kelsey is a warrior. As the pandemic isolated us, The Wicked Warriors of EG noticed the efforts of Kelsey’s Kaleidoscpe, Inc.

This weekend, the sun was shining with a chill in the air on the eve of Kelsey’s birthday. Sirens led by the local police department sounded and a sea of cars and purple balloons were soon visible outside of Kelsey’s home. Kelsey radiated with pride and happiness as the parade began. Her family and president, Mary Wagner, were truly overwhelmed. We have been so lucky to have the support of so many. Seeing support drive past our driveway was truly a moment that will not be forgotten.

Following the parade, the Wicked Warriors of EG presented Kelsey’s Kaleidoscope, Inc.: A New View for PAN with a generous donation for our organization. This money was raised over the past year through many fundraising efforts. COVID19 closures did not stop the spirit of the organization and their dedication to the community.

Again, the family and Kelsey were overwhelmed with love and support.

“The strength of a warrior, the power of a community!” Thank you, Warriors!

Stay brave and strong.

A New Day

Today, we will start anew as a nation.

Regardless of our views, it will be a day to celebrate a new chapter. Like new years bring the magic of new beginnings, a fresh start brings us together.

Challenges have met us most at many parts of the year behind.

Together, today, it is my hope that we can begin to unite and feel the magic of new beginnings.

Be brave and have hope.

Thieu

When Thieu was born, ten years ago, our world was perfect. He was a lovely and easy baby. He was only two months old, when he began to have fevers combined with rashes on his legs, arms and face. We went to our medicine and were told that the rashes were an allergic reaction to mosquitoes. The summer past, but he still had rashes coming and going.

Furthermore, he regularly was (very) ill and often had fevers. We visited several medicines, but none of them could give us an explanation and we were told that he was doing fine and that he would grow out of it.

Eventually, at the age of two, we visited a dermatologist in an university hospital. From there he was referred to a rheumatologist because of signs of inflammation in his skin and abnormal blood results.

Thieu was still vulnerable to infections, was quickly tired and had lot of mollucosa. At the age of four, he was referred to an immunologist. He was diagnosed with a primary immune deficiency and a therapy of immunoglobulins was started.

His condition improved… until two years later, when he suddenly had severe pain in his leg and barley could step. He was hospitalised and turned out to have a vasculitis and myositis in his leg. His physician directly suspected DADA2, a very rare auto-inflammatory disease, and a blood sample was send to a specialized lab. Few weeks later we got the diagnose DADA2. Our physician was open and honest in her explanation of the illness: Thieu had an increased risk at cerebral infarction and lots of other serious medical issues. Our world stood still for a moment… The rest of the family was also tested and his sister also was diagnosed with DADA2.

Thieu recovered from the vasculitis in his leg but began to have pain in other limbs. I remember a morning when he had severe pain in his arm and began to cry because his cup of milk was to far on the tablet and he couldn’t reached it. It brought tears in my eyes to see my son suffer that much.

Our physician decided that it was time to start with Etanercept. But at that moment Thieu began to have petechia, noise bleedings, had a lot of bruisings and was extremely tired. Thieu had a severe low amount of trombocytes and red blood cells. He had an auto-immune demolition of his trombocytes and red blood cells. When his body was recovered from this all, he finally could start with the therapy of Etanercept. Since then he is doing pretty fine, but still needs a frequent follow up.

Having a child with a rare disease is not always easy, the uncertainty of his condition is difficult. But we know we’re not alone: about two years ago, we had the wonderful opportunity to meet other families with Dada2 patients from all over the world in America. It was an unforgettable experience to learn more about the disease and connect to others who experience similar issues. Through the Dada2 foundation, we stay in contact with each other.

We take it day by day, trying to make the best of it! We also have the luck of having a great physician taking care of our kids, she’s really the best and that makes a world of difference!

Full article can be found here.