Meet Owen.
Owen was diagnosed with cerebral palsy at 6 months. By getting an early diagnosis his life changed forever.
“Before Owen's diagnosis, my whole world was black and white..
and I thought everything was good. I thought that I understood the way the world works. After Owen joined our family, our whole world changed into color. Life is so much more complex and sometimes scarier in color, but the world is also so much more beautiful in color. Everybody is on their own unique path and I discovered that normal, the old black and white world, is actually pretty boring.“
- Emily, Owen’s Mom
“We found out Owen was high risk for cerebral palsy only 3 days into…
the NICU. And although we could say we’re so unlucky that this happened to us, I think the most fortunate thing is that we knew so early what was going on and could understand it. We could start working with him literally out of the gate. As soon as we got out of the NICU, he started therapy.”
- Evan, Owen’s father
“We’ve been so fortunate to know early with Owen’s diagnosis…
because we have had the benefit of time. We've been able to try different therapies and techniques to determine what works best for him. We've been able to work with excellent people as we put together his support team. We've also learned that no matter how many professionals you have helping you, the most important therapy takes place at home.”
- Emily, Owen’s Mom
“Owen is still a baby, so playing, laughing, singing, and reading with him are all great ways for his brain to grow and learn.
Knowing so early that he had cerebral palsy allowed us seek out more tools to help him recover skills he may have otherwise lost. It also encouraged us to get creative with ways to allow him to experience his world and do all the things any other baby does.”
- Emily, Owen’s Mom
“I just take everyday as it comes and really celebrate the little things that he does.
For example, he sipped from a straw the other day. That might not seem like a huge accomplishment but it was amazing and brought such pride. It is important to celebrate the little milestones. You may have to adjust your original expectations but I've found so much joy and appreciation on this journey.”
- Evan, Owen’s Dad
“Emily is incredibly strong and she doesn't take no for an answer.
If somebody tells her something she will go home and read literally everything there is to read on the subject. She takes all that information and synthesizes it so well. She's just amazing.”
- Evan, Emily’s husband
Meet Taryn
She was diagnosed with cerebral palsy at 12 months & ConStraint-induced movement therapy helped her recover the use of her left side.
“Taryn’s birth mother did not know she was pregnant with her.
She had a little discomfort, got in the bathtub, and delivered Taryn in the tub. You can just imagine what that would be like, not even knowing you are pregnant and then here is a teeny tiny baby. Luckily she lived very close to her local hospital, so they rushed her off along with Taryn.”
-Sarah, Taryn’s Mom
“Taryn had a 98 day NICU stay.
She had sepsis, brain bleeds, IVH. She only weighed one pound, nine ounces and was thirteen inches long. Despite being incredibly tiny and dealing with a ton of issues, she survived and fought through all of that and still has that same determination today. “
Sarah, Taryn’s Mom
“We just fell in love with her from moment one.
We had the privilege of meeting Taryn on the day that she was released from the NICU. We were holding her, she still had all her little cords and cables and all that good stuff attached to all kinds of things. It was just a joy to get to see her and hold her and know she might be our daughter. We were just hoping we’d be able to take her home.”
Sarah, Taryn’s Mom
“We knew from day one that she was so at risk for cerebral palsy and that was key for us.
So we knew to be enjoying her, but also to be really vigilant of any warning signs so that we could intervene early. That knowledge helped empower us to seek early intervention services as soon as our daughter was discharged from the NICU. We were able to start in-home physical and occupational therapy about two weeks after our daughter came home, and I have no doubt that has greatly improved her cognitive and motor outcomes.”
-Sarah, Taryn’s Mom
“For Taryn, cerebral palsy affects the left side of her body
so we noticed she was really always looking to one direction and not the other so we worked on encouraging her to move her head the other direction. Then we noticed she was neglecting to use her left hand and then finally we noticed her left foot was dragging.
-Sarah, Taryn’s Mom
“We started some constraint therapy to encourage Taryn to use her left side.
While she had that restraint on, I remember there was one activity in which she had a mitt that had Velcro on it. We were encouraged to throw the ball toward her to see if she would catch it in her mit, and first I thought, "Good Lord, it's gonna hit her in the face". It might have the first time, but she wasn't hurt. We just kept up with it, and it was amazing to see her develop her own confidence. I think that is the key to everything, conveying to these children regardless of what their challenges are, they can do it. “
-Doug, Taryn’s Dad
“I have to tell you something that's funny.
It's been a couple of months but I was outside with her and she fell in the driveway. I'd learned from my first two children that you don't always run and make a big deal because that panics the child. I said, "Oh Taryn, are you okay?" And she looked up at me, still on the floor, "I almost fell." I said, "Honey you did fall." But for her it was like eh. She’s so tough.”
-Doug, Taryn’s Dad
Meet Tylynn
Neonatal abstinence syndrome affects 3% of all births in the US.
“We adopted TyLynn and she had a really rough start to life.
She was exposed to alcohol in the womb and there were some domestic violence issues that happen which resulted in her being premature.
So it was an emergency C section and we weren't sure if she was going to make it, but she did, and she's a fighter, and she kept fighting and hasn't looked back.”
-John, Tylynn’s Father
“When we met her in the NICU she wasn't doing a whole lot.
We questioned the nurses, "Are you sure she's ready to come home, because she doesn't look like we can take her home. Are you sure she doesn't need to stay and get a little bigger first?"
John, Tylynn’s dad
“After we got the diagnosis we met with Dr. Maitre the next day and she gave us a roadmap.
Without having that roadmap of where to go, and what to look for, and what to focus on, we would have been lost. We would've not know what to drill down on, what was age appropriate, what was the next steps, and really how to not look at it in a short glace, but really look long term.”
-Heather, Tylynn’s Mom
“Eating was a struggle at first,
we had some sensory issues with eating, and had to do some speech therapy and that helped develop those muscles. We had a couple instances where she had some choking episodes because she couldn't swallow the right way and stopped breathing on us a couple different times. It was a really scary time, but therapy helped us get through it and now she eats anything and everything.“
-Heather, Tylynn’s Mom
“Ty is inquisitive about what her big brother is doing
and big brother is annoyed by what little sister is watching him do. So, it is a nice yin and yang for each other. I think he gets a little taste of his own medicine sometimes.”
-John, Tylynn’s Father
“I think once we got the diagnosis and we kind of knew what the plan of attack was going to be,
we knew what we needed to focus on to make her develop. We knew what kind of challenges she was going to start facing, because we had more of a mapped out plan.”
-John, Tylynn’s Father