Meet Maddy & Mady
The “Same Storm, Different Boat” design is inspired by Maddy and Mady, our January 2022 featured kiddos. Separated by only 80 miles, these sweet girls are navigating their own unique medical journeys, but have many experiences and battles they share with each other and other kiddos on rare medical journeys.
Every purchase in January will be used to help cover the costs of medical and mobility equipment for Maddy and Mady not covered by insurance.
We invite you to watch their video, read their stories, and subscribe to our podcast to listen to a couple conversations with their parents.
Age 9 from Wamego, KS
After what seemed like a typical pregnancy, Megan and Joe welcomed their third child, Madelyn, into the world on August 28th, 2012, weighing only 6 lbs.
By the time Maddy was three months, she still only weighed 8 pounds. Megan and Joe decided to take her to a family doctor with concerns about her weight and eye twitching. The doctor said Maddy was fine and sent the family to a specialist in Manhattan for her eyes, but yet again, the couple was given the expectation that Maddy would grow out of it.
Looking back at that time, Megan shares, “I felt like I was not listened to. I look at pictures of the day she was born, and you can see it in her face that something was wrong. Even in those first couple of months, Maddy was so stiff and wasn’t moving much. I knew something wasn’t right. I told my husband and he started calling doctors that would take our insurance. We found a doctor and took her that day. The doctor came in, looked at her, and stopped. She didn’t even touch her and asked if we had ever had her tested for Cerebral Palsy. She left to make a call and we were in the room for what felt like forever. She referred us to someone else and we ended up going that next morning.”
That visit ended up lasting nine days, but finally, Megan and Joe were given answers for Maddy’s health. At three months old, Maddy was diagnosed with Polymicrogyria, a rare genetic condition meaning “many small folds” in the brain.
“That day was horrible. I remember asking the neurologist what my daughter’s future would look like, and he told me ‘well, she might go to prom, she’ll just dance on her date’s feet or she’ll be completely r-word. We don’t know, so you’ll have to wait and see,’” Megan recalls.
From there, the couple started taking Maddy to a neurologist in Kansas City where they had the whole genome sequencing done. The results showed that Maddy has the ATP1A3 malformation.
Megan shares, “It was quite the journey. It went from ‘nothing is wrong’ to ‘oh crap’. People called to check in on her and I just didn’t know how to tell people that our baby isn’t right. I didn’t even know how to explain it to people. After being told that we didn’t know what her future was going to be like, it made it even more difficult.”
Over the next few years of Maddy’s life she was in and out of the hospital but the family continued to do their best to navigate their new world.
Today, Maddy is nine years old. She loves quality time with her family, Disney movies, music, and art and crafts. Maddy is also non-verbal, 100% g-tube dependent, uses a wheelchair, and cannot sit up or stand independently. She has severe dystonia which keeps her from being able to hold her head up. The Polymicrogyria also causes Maddy to suffer from seizures, reactive airway, asthma, Cortical Vision Impairment (CVI), and hypertonia/hypotonia. She receives care from multiple specialists and attends therapy 2-3 days a week. She’s known by her family to be an extremely happy little girl who loves her family very much!
Time to get loud shouters!
Throughout the month of January we will be shouting loud for Maddy!
So click here to shop now where every purchase in January will be used to help Maddy be more mobile through the purchase of a new adaptive stroller.
To help support kiddos like Maddy every month, click here to start a monthly subscription.
Age 8 from Hiawatha, KS
On June 28th, 2013, Kim & Brent welcomed their second daughter, Mady, into the world.
At about three months of age, the couple noticed that Mady wasn’t meeting her milestones. She also didn’t have much control over her head and her eyes were not focusing correctly. To find answers, the family started their journey at the Ophthalmologist who then sent them to a neurologist.
For the next four years, Mady went through a whole gambit of testing. She had an MRI, CT scan, Lower Lumbar puncture, EEG, and metabolic level testing. All of which came back normal.
Looking back at that time, Kim shares, “We started calling it ‘frustratingly normal’ because we were at a loss. Mady wasn’t meeting any of her developmental milestones; she was always very rigid, wasn’t sleeping, and at times, seemed to be in extreme pain. We traveled to different doctors to get second opinions. Each time they thought they knew what it was, it was ruled out by a normal test. In those three years, she had torticollis and plagiocephaly. She had to have a helmet for a year to help reform her head.”
Mady’s neurologist ended up sending them to the Vanderbilt University Medical Center’s Undiagnosed Diseases Network. It was there, after doing both genome and exome sequencing, that she was diagnosed with UBA 5 gene mutation. This was nine days after her fourth birthday.
“We had searched for answers for over four years and finally, we had a name. That was all we had. She was the first in the United States and one of eight in the world. There had only been one study done on UBA 5 overseas, so there weren’t many answers. We still don’t have many answers, nor do we know what her future looks like. What we do know is the disorder affects all of our warriors differently.”
In Mady’s journey, UBA 5 gene mutation has presented itself with seizures and dystonia, which causes complications with the brain’s communication with the rest of the body, especially the muscles. In August of 2020, Mady had a deep brain stimulator placed to help disrupt the dystonia and allow her brain to make the connections to the rest of her body.
Today Mady is eight years old. She is known to be a persistent, loveable little girl who exuberates happiness. She loves dancing, Husker football, and her older sister, Ali, is her favorite person in the world.
Kim shares, “Since having the deep brain stimulator placed to help disrupt the dystonia, we have been seeing huge gains, but still have a long way to go. I have never met a kid more determined than Mady. She never gives up and is persistent to a fault. She definitely makes the world a better place and brightens the lives of all the people she encounters. Our journey has been long and at times unbearable, but I thank God every day that he made me her mom. She has taught us the joy of life and the importance of slowing down and truly making each moment something to treasure.”
Time to get loud shouters!
Throughout the month of January we will be shouting loud for Mady!
So click here to shop now where every purchase in January will be used to help purchase Ankle foot orthosis (AFO) & communication device for Mady not covered by insurance.
To help support kiddos like Mady every month, click here to start a monthly subscription.