UPDATE — 8:57 p.m. Tuesday, July 19, 2016 (EDT) Maddie is in the PICU recovering. They’re considering a blood transfusion as she lost blood in surgery, but so far it’s not needed at this time. Madelyn’s mother Patsy Rady, says her mandibular distraction has been successful.
Maddie is in recovery after major surgery. ❤ #MaddieStrong abc10up.com/madelyn
Posted by ABC10 & CW5 UP on Wednesday, July 20, 2016
“We’ll be adjusting it for the next month or two and then another surgery to take it out,” says Rady. “She also had an auditory brain response while she was under and found she has moderate hearing loss and will need hearing aids, but they’re unsure of the next step to take for that and which route to go due to the area we live in and lack of specialists nearby.”
Doctors were unable to place tubes in her ears. She will eventually need them, but Rady says there’s not enough room behind the eardrum due to the structure of her ears.
“Good news is they discovered she does in fact have a tongue which they were unsure of or where it was before, and it seems to have pretty good mobility but the ENT is still unsure if it will ever actually be functional, but it’s a good sign for sure.”
We’re pulling for you, Maddie.
HURLEY, Wisc. — For our first installment of ‘ABC 10 Feature, one Upper Peninsula native is defying the odds. After being born two months premature and with a genetic disorder, doctors said she would not live to see her first birthday. This is the story of one tough little girl.
For most families, celebrating a baby’s first birthday is an exciting celebration, but for Maddie, it was exceptionally important.
When Maddie was born, she was diagnosed with Agnathia-Otocephaly Complex, a genetic mutation so rare that only a handful of people have been diagnosed with it this year.
Children who suffer from this mutation can face various different abnormalities such as malformations of the mandible, mouth, tongue, and even ears. Each of these malformations can be lethal due to lack of oxygen to the body, and children who are typically born with this illness are not likely to live past one year.
“I saw it in their eyes when they told me that, they didn’t want to tell me that but they also didn’t want to give me false expectations,” said Patsy Rady, Madelyn’s mother. “I like to say that they were just trying to prepare me for the worst because you never know.”
When Maddie was born, she was immediately airlifted to a hospital in Duluth, Minnesota. Her Mother was told that she wouldn’t likely survive the plane ride.
Maddie surpassed physicians expectations and is now 18 months old. Despite Maddie’s bravery, the road to this point has still been tough.
“It was really, really hard to say the least,” said Rady. “I mean it was one thing to be outside of the hospital and think about the option they gave us to pull the tracheal, but just as soon as I walked in the room and saw her, I just didn’t think there’s no way this could happen. There’s no way this is the case. This is my daughter and she’s still fighting.”
Maddie must have a tracheal tube in at all times for proper breathing. She is also fed through a feeding tube and given medication through there as well. The tracheal tube needs to be cleaned everyday and switched out once a week.
All of these medical needs are performed by Maddie’s mom who is relied on for more than just being a mom.
“I think the biggest struggle has been just trying to be a Mom, a nurse, a social worker, and everything really. It’s trying to organize these appointments, trying to get the medical supplies we need, and just everything, it’s a lot. And being from such a small area, we don’t have a whole lot of people advocating for us.”
Both Maddie and Patsy are originally from Ironwood, but have recently moved to Wisconsin to receive more beneficial medical insurance.
Despite the move, the commute to Maddie’s medical treatment is a five hour long drive to Madison. Maddie has ten to twelve different specialists causing Patsy to need to drive to Madison – sometimes several times in one week.
Although Maddie’s surgeries are covered by medical insurance, the medical equipment required for her survival, such as the tracheal tubes, are paid out of pocket by Patsy.
Patsy is a single working parent, but the bills are still stacking up, which is why she decided to turn to the internet to setup a donation page.
“I actually felt bad setting it up to start with just because were home now and things should be different. I just went back to work so it was kind of hard to have to come to the point where I had to ask for help again. There has definitely been people willing to help out and after hearing her story and following her story and wanting to help with what they can when they can.”
Maddie’s next surgery is scheduled for next week, where she’ll be meeting with a craniofacial team for the first part of her mandible distraction along with getting tubes placed in her ears.
Despite Maddie’s journey, she is still just like every other child who loves to play and at times be a little sassy. Maddie is a fighter who won’t take no for an answer.
If you want to keep up to date on Maddie’s progress after her surgery, you can check out her Facebook page at Maddie Strong. Also, if you are willing to donate to her family you can visit their website at you-caring.com/MS.