The Merritt Family
Our Story
In March of this year, my son Brekkan, now 9 months old, had a tumor on his right kidney. The tumor had grown very large in size and we were sent to Children's hospital in Minneapolis, Minnesota. After scans confirmed, he had surgery a few days later to remove his right kidney. The hospital sent the tumor to the laboratory and it came back to be a Wilms tumor.
He is having more testing to check genetics to see what could be causing it, but for now they're going to watch it and do scans every couple months to make sure no other tumors grow. This has caused delays for Brekkan achieving milestones and consistently going to physical therapy, chiropractic care and other appointments to help him continue to grow a healthy way.
This has been really hard on the family. I've had to take off work for the surgery, appointments and healing period. It's hard to catch up on bills and all the things my kids need. He has a brother, Braxton, who is 2, and has been great support during this time, but also hard because he has to be at all the appointments too. It doesn't seem real still at times and has been really hard. Even though we have support, we are still learning to adjust and truly taking it one day at a time. Thank you.
Family Updates
Keeping our village in the loop! 🗺️✨
For the past few months, we’ve been looking into why Brekkan has been hitting his milestones a little differently. We finally got some answers through genetic testing. Brekkan has a rare neurodevelopmental disorder characterized by developmental delay, hypotonia (low muscle tone), and language impairment.This genetic condition is so rare and newly identified that even the doctors don't have many answers for us yet. One piece of information we do have is that the gene involved also acts as a tumor suppressor. Because his gene works a bit differently, he will have an increased risk for certain cancers over his lifetime.
This means lifelong monitoring, but it also gives us the power of early detection. What we know for sure right now is that our sweet 10-month-old boy is a fighter. He will need extra support and intensive therapies as he grows, and we are ready to learn right alongside him. Thank you all for being part of his village! 🧩💙
#RareDisease #HypotoniaAwareness #GeneticDisorderAwareness #childhoodcancerawareness
Brekkan just got his results back from genetic testing and he has a rare genetic disorder that creates wilms tumors and other developmental delays. It's so new that they don't have a lot of information on it. We are hopeful that with physical and occupational therapy and other support services he will continue to thrive in his own way.
A few weeks after surgery. We are grateful for the good days!