How We Have Grown In 2024 + Update on Babies
How is it June already? This year is flying by faster than any other year, I swear. I am happy to report that this has been an amazing year in terms of helping for Brady Wynn Foundation. In 2023 we had a few dry spells that I tried to look at in a positive way meaning nobody needed us, but I knew that wasn’t true, people did not know about us.
In 2024 we have 7 families, our goal for the year is 12, putting us ahead of track. Children’s Hospital of WI has sent us 3 families. Social workers send families our way along with their Dream Clinic. We have had 2 families referred to us by family friends who knew about our foundation including one family who has gone through our program and continues to be a big part of our story because he joined our Board of Directors. I have to pinch myself constantly and remind myself what a big thing we are doing. We are providing the kind of help that would have made a huge difference in the time I had with my Brady. It still doesn’t seem real that this is what I get to do. I get to connect with families and provide them security and reassurance during a time when their entire world has been flipped upside down. I get to do all of this because of the one and only Brady Wynn, Brady Boo, the sweetest little angel.
Brady Wynn
Changing the world all the way from Heaven. This is all because of you sweet angel.
This year I have had the pleasure of meeting more Brady Wynn Foundation babies. I recently got to share some snuggles with baby Oaklen. He is such a sweet boy with a wonderful family. Talking with his mama was easy and comfortable, we had an instant connection.
Oaklen
I had the opportunity to meet the precious Joelle when her super parents arranged a Community Impact night at Pizza Ranch in Green Bay WI. She was a trooper and stayed the entire time. I got to meet grandparents, aunts, uncles, cousins and her parents. It was an experience I will never forget and one of the absolute highlights of Brady Wynn Foundation- seeing a family come together to support us and to witness the support Joelle has. I am lucky to say I have met Willow many times, most recently at Bags for Brady where her parents, their friends and their family continue to support us. Willow is another baby with a huge, amazing tribe behind her. I was able to meet Lexi, Hudson, and our first baby Garnet at our Santa Photos last year. I’m lucky to get Hudson updates more often as his super Dad is on our Board.
I never imagined getting to meet these sweet babies and it is hands down the most rewarding part of doing this. It makes me tear up at the thought that these parents are so willing to share their precious child with me. When I receive an update on a baby it makes my day. I think about all of them daily and I send them prayers daily when I am in my office looking at their beautiful photos and stories.
Here are updates I have received this year.
Willow Wynn
What a sweet little lady. With her gene therapy, she is living life like any other 1 year old. Thank God.
Willow Wynn recently turned ONE! “It has been a roller coaster of a year, and we can’t help feeling extremely grateful for our family, friends, doctors, community and most of all God’s hand in healing our little angel. For her (and us), every birthday will be a milestone birthday. While it is sometimes tough and emotional to look back at the photos- God has blessed us with the happiest little girl. Willow has donned her perfect little smile the entire time like she knows she’s a little (almost walking) miracle. We are extremely grateful to share the news that since her Type 1 SMA diagnosis at 4 days old, she was able to receive the Zolgensma Gene Therapy Treatment and has passed the one year protocol period with flying colors. Willow is moving and grooving through life as if SMA was never a thing- and for that we are beyond grateful. Life has regained a sense of normalcy again as appointments are back to the routine children’s checkups.” - Willows super Dad
Our first baby of 2024 was Calli. She had a 5 cm tumor in the cerebellum of her brain. Surgery was successful and Calli continues to progress and has gained back most of the skills she lost. She completed high-dose chemotherapy and is now in her rounds of stem cell transplants that require a lot of nights spent back in the hospital. She’s doing great! Calli goes back tomorrow for round 2 of stem cell transplants. She’s gaining weight and is strong and healthy right now. Calli got to come home for 10 days this time because she recovered quickly. She’s been so active and getting into EVERYTHING. Back before transplants she was in pretty rough shape with a bunch of infections and a burst appendix (not related to treatment, just bad luck and timing) that delayed her transplants a couple weeks. Needless to say, her family is so grateful! She is a trooper and handles it really well. Calli also became a big sister in March.
Calli and her little sister
This is pure love. This picture says it all.
Baby Oaklen just finished an intense protocol to get his seizures under control. This took a lot out of him and even got him admitted to the hospital a couple of times. Since getting Oaklen’s genetic results his mom has found an online group for parents handling the same thing. Fun fact- she was found because we introduced Oaklen on our Brady Wynn Facebook page, how cool is that? The group only has 5 kids mainly in Germany but there is one other baby from the USA. I hope this group can answer more questions for Oaklens family and provide that connection that makes all the difference. Oaklen now has a g-tube (feeding tube that goes directly into the stomach) but his family is adjusting. They are constantly amazed by their brave, strong little guy.
Garnet, who will be 2 this month, is attempting to roll over, he is holding his head up, and beginning to babble. He now has a G-tube which has been an adjustment but it’s helping him get stronger. He is trying to communicate with his family. He loves going on walks with his sisters in his wheelchair, he loves any music with a heavy beat, and he loves to pretend he’s a shark and BITE!
Garnet
Such a happy guy loving his wheel chair and learning to communicate is his own way.
We have two families that have babies with Dandy-Walker Malformation, a condition where the cerebellum doesn’t develop normally. We were able to connect these families together as they understand more of what each is going through than I ever could. Hearing about these connections is just beyond words to me.
Annaleia
Aubrey and Annaleia were our May babies. There is an online support group that I am still in from when Brady was here, and I go to it once in a while. These two precious little ladies were found there. Both babies suffer from seizures. Annaleia has brain atrophy with preserved brain stem function. Aubrey has a disorder where her brain didn’t completely divide. They both attend many therapies and have numerous providers with frequent follow-ups.
Aubrey
Providing connection to families is one of our top priorities. Having someone to walk with you when things are scary, someone who can shed some light from experience instead of a doctor can make an incredible shift in someone’s mind set and have a profound impact. I found a connection when Brady was alive, and it was hands down what helped me the most. We both lost our babies, but we still check in on each other from time to time. My personal story ended very poorly, and I fully know that can scare parents and add extra worry to an already stressful time. This is why I try my best to connect families from this group together.
Many parents have given me the ok to connect them with another family who is just starting this journey. These parents who are already handling so much but are willing to take on more to help another family are the world’s truest superhero’s. It takes an enormous amount of time to be ready to help someone else when you still need help yourself. Our community is more about helping each other out when needed. Did you know penguins huddle to keep warm? The middle of the huddle can reach 98.8 degrees Fahrenheit. The penguins rotate to keep the ones who need extra warmth in the middle and then switch to give the outer penguins some heat and relief. I want this group to be like penguins, taking turns holding each other up. No pressure, just providing and receiving comfort.
Connection:
“The energy that exists between people when they feel seen, heard, and valued; when they can give and receive without judgment; and when they derive sustenance and strength from the relationship.”- Brene Brown
I am learning as I go that the only reason, we are able to have such high’s in this messy thing called life is because of those very dark times. After going through something so life altering it can be so difficult to see things happy again. To find hope that good things will come into your life again. But I promise, you will. Not because you are greatly resilient, but because you are beautifully human. Humans are built to wait out the pain and eventually when the time is right, we attach ourselves and turn our focus to other good parts of our lives.
You can and you will and you deserve to live a life more beautiful than you can even imagine. It takes self-care, self-love, and knowing you are worthy- worthy of anything and everything you want. We have a choice after something so brutally cruel happens. We can either be afraid of the world and isolate ourselves or we can get out there and be the change. We can dig in where we hurt, where we can be a real help to those who need it most. Together, we can be the change because we all have difficult times that have taught us so much and given us real life knowledge that can help make life more beautiful for someone else.
Let’s be the change, I dare you.
As always, you are loved, you are worthy, and you are enough just the way you are.
XO, Mandy (Brady’s mama)