Meet Roslyn & Maddox
Roslyn is a cheerful, cheeky, bright eight-year-old who loves candy, her family, and power wheel soccer. Her youngest brother Maddox is a smiley and joyful one-year-old. Together they are navigating an undiagnosed rare medical journey.
Every purchase in July will help the family purchase a larger van that accommodates Roslyn and Maddox’s wheelchairs and medical equipment. We invite you to watch their video, read their story and subscribe to our podcast to listen to an interview with their parents.
In 2013, Tiffany and Justin were excited to welcome their first baby girl, Roslyn, in their blended family of three. Everything seemed normal in Tiffany’s pregnancy until her 20-week ultrasound. Roslyn hadn’t moved, but they figured she may have been sleeping. The couple did another ultrasound at 26-weeks and things quickly changed.
Roslyn still wasn’t moving.
The couple was emitted immediately after for a maternal fetal ultrasound. Reflecting on that time, Tiffany shares,
“We were told some terrible things. We call this time ‘the dark days’. My fluid for Roslyn was really low, on the brink of delivering, so from 27-34 weeks, I had two ultrasounds a week to monitor my fluid and she still never moved. She was like a statue. Our doctors assumed her passing prior to birth, so we canceled all of our baby showers and prepared for the end instead of the beginning.”
We had been told that she had no chance. I remember at one appointment, we asked the doctor if she had a 1% chance of living and they just kind of looked at us and said, ‘that’s not what we’re saying.’ It was hard to get a direct answer but I remember the phrase ‘fetal demise is likely’ being read to me over and over again on paper. It was my first pregnancy, so I had no idea. I just trusted the opinion of the professionals.”
At 34-weeks, Tiffany’s water broke and the couple was immediately put in for a C-section. Based on the news the couple had been given for weeks, they decided to go with a DNR.
“In that moment everything changed, Roslyn came out with quite the fighting spirit.”
After Roslyn was born, she ended up spending three months in the NICU. During that time, the couple decided it was best to not intubate her while in the NICU.
“Even as a baby, when Rosyn was good she was great. Don’t get me wrong, there are a lot of complications. She had to lay on her side a lot as a baby because she couldn’t swallow her secretions, she had an apnea machine, and a suction machine.”
As time went on, Tiffany and Justin continued to learn their new way of life.
“In hindsight, we learned that because Roslyn didn’t have a trach, we didn’t qualify for any help with nursing.”
For two-and-a-half years, the couple battled with Roslyn’s unstable airways to keep her from having to get a trach.
“It was partly out of fear and partly because we were uneducated. We had to work through the misconception that having a trach meant a lesser quality of life. There was a lot of fear about being responsible as a parent for the choice of your child when you just want the best for them.
Roslyn is very physically impacted, so her access to the world is her voice and she uses it very well. From a young age, she was very vocal, so as that developed it only increased the fear of taking away the one thing that was coming easily to her. It was an overwhelming decision to make so we were very apprehensive to do a trach.”
A season came where Roslyn was continuously getting sick and it wore her body down. She ended up being intubated and when the time came to extubate her, she not-so-soon-after failed and the staff would struggle to get the breathing tube back in. This happened on several occasions with one occurrence leading to Roslyn being bagged for forty-five minutes.
“We met with our team at the Children’s Hospital and one of our trusted providers told us that ‘no one in this building wants to pull her breathing tube out again because we know we almost can’t get it back in. If you want her to be safe in the future and want her to grow, then this is what you should do.’ We trusted his opinion and were at a point where we asked ourselves, ‘do we lose her or do we do it?’”
Tiffany and Justin ultimately decided that the fear of losing her was more than the repurcians of the trach so they scheduled Roslyn for a trach the next day. Roslyn ended up spending another three months in the ICU as she regained her strength. She got to go home two days after Christmas and as Tiffany states, she has excelled ever since.
“As a family we have learned a lot about the world of trachs and ventilators and what life looks like and what it can be with all of that. It was ironic that eight years later, we would do it all again.”
By this time, it is 2020 and the couple decided to grow to a family of six. “When we found out it was happening again, there was a process to accept it but it wasn’t as sad and dark. We weren’t planning for the end. Even though the pregnancy was complex and we knew our family life would shift again, we saw how Roslyn was absolutely thriving in life.”
Sharing the news with our kids was difficult. The oldest took it the hardest and the youngest didn’t really understand. To him Roslyn is just his sister, Roslyn. When we told Roslyn, she was sad at first but then she asked if the baby was going to have a wheelchair. We told her yes and she squealed with excitement and started dancing with her legs, ‘We’re going to be a wheelchair family!’ She is so joyous that she somehow makes difficult things humbling.”
By the time baby Maddox was born in May 2021, the couple advocated for Maddox to get a trach right away and because of it, he was home in two months. “Maddox is doing awesome. We are seeing the benefits of doing it early instead of waiting like we did with Roslyn.”
Both Roslyn and Maddox are technically undiagnosed, but both fall under the diagnosis of Arthrogryposis Multiplex Congenita (AMC). AMC refers to the development of multiple joint contractures affecting two or more areas of the body prior to birth.
Today, Roslyn is eight years old and is known as being a very cheerful, cheeky, and bright girl who loves candy, her family and powerwheel soccer. She is very intelligent and extremely articulate for her age. “She’s truly great company and conversations are always fun. I always tell people that she is a 99% typical eight year old and that 1% is how she is different,” Tiffany shares.
Maddox is now one year old and is showing to be a very smiley, joyful little boy.
Even when facing the unknowns of being technically undiagnosed, the family continues to live out their days with lots of laughter and fun. “Our kids are so happy and joyous that if you get away from that then you are immediately missing out. They are great now; we don’t have to wait for something to be better or change to be living the best life right now. This is not what we thought life would be, but we have survived it so far.”
Time to get loud shouters!
Throughout the month of July we will be shouting love for Roslyn and Maddox!
So click here now where every purchase in July will go toward the purchase of a wheelchair van to help Roslyn & Maddox get around safely.
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