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.

2020- Guest Post from Kelsey

2020 was what many people called a tragedy and a time of regret. Maybe for the world, it was.  I tried to look on the bright side and realized that it was a good start to a decade for my family. It was probably one of my best years health-wise, and my treatment has been going strong as we approach the two-year mark.  The two-year mark usually is when all therapy stops working for me. 

As I reflect, I realize that my family spent time with relatives and friends, even just on facetime, zoom, google meet, or on the phone. What I am saying is that 2020 wasn’t such a bad year in some ways. No one got COVID and we were all safe and sound together.   I would like to give a big shout out to the front line workers that help make our family and many others safe. 

Those efforts made it possible to have fun at home with each other. I played with my brother. We got to play more together and became pals for life. We played games often, and when we were finished, no one got hurt. In all, when I look back, I am grateful for that. 

For the world, that was a different story.  To the people that lost loved ones, my family and I pray that you are in a better place. We lost a beloved mother, grandmother, and mother – in – law.  She will forever be in our hearts. 

To everyone, think positively and make 2021 a great year. 

Be brave and look on the bright side of things.

COVID Christmas

As we close December and the year of 2020, reflection is natural. This year has so many facets, so many points of passion for our country, so much sadness for so many. Christmas was a time to count our blessings. We did so on a very small scale and were grateful for those we were able to see.

Close calls and an abundance of caution withheld other celebrations, even those we planned to share from a safe distance.

We hope that 2021 brings us all a sense of peace to ensure our holidays in 2021 can look Merry and Bright in their full form.

The new strain identified in the UK and now surfacing in Colorado presents new challenges for us all. However, with safe practices, an abundance of caution, and vaccine distribution, we remain hopeful.

To 2021, may it bring you joy, health, and happiness.

Be Brave. Mask Up. Hope.

dada2 – Israel

The main focus of our organization is bringing awareness and support to our research efforts. In 2020. distance is a natural part of our daily life. The dada2 organization brought a global perspective to dada2 research and international cohorts of patients. We feature the Israel Cohort today. Their research and partnership with the United States helped Kelsey with treatment upon diagnosis. We are grateful for the outreach and the medical collaboration made possible by Dr. Chip Chambers and the National Institute of Health.

Joy to the World

Only a few months into playing the guitar, and joyful sounds help us through the holiday season. May joy and happiness find you this December.

Be Brave. Find Joy. Smile.

dada2 – Hope for 2021

Thank you to Dr. Chip Chambers for continued research to help us get one step closer to a cure.

Be Brave. Hope. 2021 looks brighter already…

Thanksgiving COVID style

This year is heavy for so many reasons. The lack of normalcy, or should we say the development of our new normal, tested our strength and resilience in many ways.

We also faced the loss of a loved one suddenly, leaving a realization that each day of the season will be different.

Navigating our current local surge in COVID cases did not make Thanksgiving or planning easy decisions for our family.

We choose to stay home as a family to protect the ones we love. This made it a memorable day as we typically share blessings and many loved ones.

Though quiet and calm, we also have much to be grateful for in our lives. We talked over dinner about 2020 and the many changes it has brought to our family. Change is often our only constant, but change can be promising, too. C

Change can bring us growth in unexpected ways.

We counted our blessings together.

The season of giving is now upon us, and it still brings magic in 2020. This year, we recognize that our gifts are found in connections, relationships, and those we love.

We thank you for continued support and love.

With Gratitude

2020…

Grief. Loss. And Isolation.

Somehow, even in 2020, Kelsey’s Kaleidoscope brought us together to laugh and share a moment of love. A moment of silence was dedicated to one of Kelsey’s biggest supporters, who lost her life too soon this year. President, Mary Wagner, offered a touching tribute in Mary Ellen’s honor. Though the virtual event was not the same without Mary Ellen’s laughter filling the Zoom stream, the support for Kelsey and our global efforts must go on.

Hope. Gratitude. And Love.

That is how we felt on Friday evening.

Thank you for the overwhelming support and continued hopeful efforts. We will see you back in 2021 (hopefully live) for our Sixth Annual Comedy for a Cure. Save the Date for November 19, 2021.

Emotional Energy

2020.

It has been a true rollercoaster of emotion no matter who you are, what you do professionally, or what stage of your life you are facing.

This October, our family finds that our emotional energy is stretched this. Losing our Gran, two close encounters in the ER, and a visit later this evening remind us that health is a true priority and a gift.

COVID19 scares us, isolates us, and connects us all at the same time.

When you try to hold it all together, sometimes it is clear how the true disconnect can somehow combine to be different from what you expected. Yet somehow, all that you need.

Hold your love ones close, be brave, and make today incredible.