The truth is, blessings surround us.  After two months of frustration and insurance battles, our medicine arrived. We are settled in a routine and we are surrounded by love.

With all of the medicine our doctors have trialed and all of their challenges, this one has kept Kelsey the healthiest and happiest to date.  

With the right medicine, Kelsey appears to be sunshine on a rainy day.  Her positive light shines wherever she goes.

Her size and stature have grown in a way you may not comprehend if you knew her when…

When:

No one could find the words to heal

No one could identify the cause of concern

No one could tell us why the strokes happened

No one knew if she would walk

No one knew if her legs could hear the weight

No one knew why her gait was off

No one knew where to go next

No one knew how school would look

No one knew if sports were an option

Now:

We honor her scars

We fight for Kelsey and advocate for others

We celebrate her hard work in school and every grade she earns

We champion every game she plays

We are proud beyond measure for everything she does 

We dream of her future and a cure

Your support and generosity have helped us celebrate, champion, and fight.  Join us on 11.18.22 to learn more and help us achieve our goal of awareness and finding a cure.

Guest post – We send strength and love to Aiden.

Aiden and I have been admitted to CHLA since May 15. His BMT was scheduled for June 6th. But was postponed due to Aiden having high fevers and testing positive for Rhino-virus. He had a CT scan of the chest, abdomen, and pelvis. This was the last step we needed to move forward with his BMT. But they found a lesion inside Aiden’s right upper lung. This was totally UNEXPECTED. He was on antibiotics and IV fluid for several weeks. He had many tests and procedures done to find the reason for this new infection. He had an NG tube placed to collect fluid from his stomach for possible TB and fungal infections.

More lab work to rule out possible valley fever. He was in isolation for 6 weeks. Unable to keep food down or liquid he got so weak he wasn’t able to walk. During this long stay, Aiden has been in and out of the PICU. His breathing continued getting worse. Aiden was working so hard to keep his oxygen level stable. At one point, he was on high-flow oxygen therapy, CPAP, and intubated for support. Finally, after 3 months we found out what was in his right upper lung. Liquid from having paralyzed vocal cords. Occupational therapy suggested we put him on a dysphagia diet to help him slow down his liquid intake.

Until the beginning of September, Aiden’s oxygen dropped into the ’50s. He was rushed back to the PICU. Now waiting for a Trach to help him breathe on his own and off of the machine. Being parents to a child with a compromised immune system and a genetic disorder is very difficult. Even harder with bilateral vocal cord paralysis. It’s definitely not easy to stay positive when your child feels ill. We continue to pray for him and his health. I know God has a plan for our son Aiden

#ADA2Awareness#RareGeneticDisorder#Neutrapenia

Amidst celebration of birthdays and milestones, summer sickness crept into our home. Our vacation plans and family celebrating remain on pause, but the main impact of our recent medical visits was the conversation surrounding family illness.

The discussion surrounding how a fever sends smoke signals and a lingering cough prompts fear look different at eleven than they were between adults when Kelsey was only nine. At eleven, she questions and worries herself.

Our dialogue shifts as our children grow in age, but our mission is always the same.

We thank you for your continued support and hope to make our rough roads paved with strength and hope for new family’s facing this diagnosis.

Here’s to hope, strength, and bravery today and every day!

May summer illness shift as quickly as the date fly by…

As Kelsey begins her eleventh year, emotions and feelings are often a point of discussion. Regulation and coping strategies are important to learn and develop early, and Kelsey does a great job.

We speak often about feelings and try to reflect often together.

Last night, Kelsey did ask if it was normal to cry when she was comfortable in her bed to wet her eyes and ease into sleep. She thanked us for talking through her emotions and giving her new tools to use to handle her feelings. This came up because she continued to tell us that when she was younger, in horrible pain, and taking so much medication, it was easier for her to quietly cry in her bed than it was to talk about how she was feeling.

Though she does not do this anymore, it was certainly hard to hear that it was once a regular evening ritual. The more we listen, the more we learn.

We are grateful to have conversations with our children, but we know that sometimes the feelings below the surface can vary from the way they appear.

Be brave. Be strong. Be honest 🙂

January felt like a year within itself. Illness, celebration, isolation, and snow. The dark mornings made it hard to work through at times. Together, we worked through it all.

We continue to hope for a healthy and safe 2022.

February started yesterday with 2.2.22 upon us today and 2-22-22 to follow soon. Milltown Mel passed away hours before Groundhog Day in New Jersey, and we await the outcome of Groundhog Day without him.

If the pandemic has taught us anything as a family, it is resilience. We hope that February 2022 is a great one for you and yours!

Make a wish.
She wishes COVID would come to an end.
What has been your favorite part of the year for you?
I did not get COVID and even though I missed a lot, I stayed healthy.
This year has been a tough one missing out on events, activities, and fun.

We are getting there, we hope, but we know this year has been hard on us all.
Our children dream of better days ahead.
We hope to see this wish come true.
Dream big.
May your dreams always come true, Kelsey.

The world shines brightly with you around.

COVID precautions have brought us to cancel our 1.22.22 Wings event. We will issue a refund to all who purchased and let you know of our new date OR our date for next year.

As always, we appreciate your support!