It's true: Not all heroes wear capes. Some are just 3 months
old and are already in the fight of their lifetimes. That's the case for Randy
James Ahlers - "RJ" - and his parents, Angel and KC Ahlers of Toledo.
Angel Ahlers says they are willing to do anything for their
son, even as medical bills are bankrupting them. They do have medical
insurance, and she is a nursing assistant at St. Anne's, but many of RJ's
medical tests are being said to be not medically necessary.
Owen Watson has Mosaic Trisomy 9, a rare chromosomal
disorder. As a baby, he was failure to thrive. Now, Owen is walking, using sign
language and gracing the world with his unbelievably sweet spirit.
Owen Watson is scooting around in a red and yellow car, his
sweet face peeking through the open front window.
He climbs out and walks toward the miniature house. He runs
through the front door.
And then Owen starts signing. It’s a hot day outside in the
play area of Riley Hospital for Children at IU Health. He wiggles his fist –
the sign for a milkshake, which sounds good to Owen right about now.
Sierra Watson is sitting on a bench, watching her 3-year-old
son. She is in awe of all he’s doing. She’s grateful. She’s blessed.
And, yes, she is sad, too.
As Sierra tells the story of Owen’s journey, it is a tale
mixed with smiles and tears.
Owen, who turns 4 this month, has Mosaic Trisomy 9 – an
extremely rare chromosomal disorder in which the ninth chromosome appears three
times rather than twice in some cells of the body.
The condition is so rare that it’s estimated that just 200
to 1,000 people in the world have the syndrome. Owen is believed to be the
first known child diagnosed at Riley. Another patient, Ivy Case, also is
treated at Riley.
In many cases, children with Mosaic Trisomy 9 have extreme
developmental delays. Some never walk or talk. Many have severe intellectual
disabilities. The prognosis for Owen is unknown.
And yet Owen, who was labeled failure to thrive as a baby,
is at Riley telling strangers “thank you” by touching his fingers to his chin.
He can point out colors.
Sierra often finds it hard to believe that Owen is doing so
well. He’s had more than a dozen surgeries, plenty of scares and is still
nonverbal. Yet, by all measures, Owen is thriving.
That can be credited to a solid philosophy in the Watson
household. Sierra and Owen’s dad, Daniel, do not let his diagnosis define him
or get in the way, Owen still has the same expectations as his 6-year-old
“We don’t put limits on anything,” Sierra says. “We really
push Owen and I think that is part of why he is doing so well.”
Minutes later, Owen smiles. And then he signs: “I want a
Her pregnancy with Owen, Sierra says, was textbook. She had
plenty of ultrasounds – Sierra is a labor and delivery nurse – and nothing
Because she’d had a C-section with Cole, Sierra was
scheduled for a C-section with Owen. When Owen was born and taken over to the
warmer to be checked out by the medical team?
“I could tell something is wrong,” Sierra says, “but they
didn’t say anything.”
Eventually, Sierra was told that Owen would need to go to
the neonatal intensive care unit for breathing problems. Being a nurse in the
field, Sierra didn’t think that was too unusual.
But several hours later, she learned something different.
Owen had a cleft palate. He had a very small jaw, which made it hard for him to
The original diagnosis: Pierre Robin syndrome – a condition
where babies are born with a smaller than normal lower jaw, a tongue that falls
back in the throat and difficulty breathing.
Owen was taken by LifeLine ambulance to Riley. The next few
weeks were filled with meetings with specialists.
And then, when Owen
was one month old, “we get this earth shattering diagnosis,” Sierra says.
Mosaic Trisomy 9.
Sierra went to Google. The worst-case scenarios popped up.
She was devastated. But soon, she found other families from all over the world
who had children with Mosaic Trisomy 9.
And their hope gave her hope for Owen.
“He’s the sweetest kid,” Sierra says. “He’s doing really
Owen’s biggest issues now are feeding and breathing. He uses
a feeding tube, but also eats by mouth.
In addition to those cheeseburgers and milkshakes, Owen
loves waffles, peanut butter and jelly, all things carbs.
And he works hard to keep getting stronger – in all areas of
his life. Owen does physical therapy, feeding therapy and occupational therapy.
He practices sign language at home. And Owen goes to preschool.
As Sierra looks back on Owen’s journey, she says it’s so
important to remember: “This is your child. It may seem bad at the time, but
it’s going to be OK.”
Just look, she says, Owen is living proof.
Advice for parents of children with special needs: “You have
to find time to take care of yourself. Even if that means taking a nap or
having coffee with friends or going away for the night, your mental health is
important,” Sierra says. “Also, you can’t forget about your marriage. Bringing
a healthy child into a marriage brings added stress, but throw in health
problems and it can be detrimental. You have to find time to be a couple. And
when it comes to your child, don’t be afraid to fight for them and to ask
questions about anything being done.”
Ivy Case has Trisomy 9 Mosaic, a rare genetic condition with
a devastating prognosis. And, yet, Ivy is beating the odds.
Ivy Case is blowing bubbles. Sometimes, if she’s in the
mood, she will curl in her lower lip and crack the tiniest of smiles. She has a
sweet babble and will squeal if she recognizes a voice.
She also has a G-tube, oxygen, severe vision impairment and
a look that, at times, will cause strangers to stare.
Ivy is 10 months old. She was born with a rare genetic
condition called Trisomy 9 Mosaic. Google it and the results are devastating
and daunting – an unending list of abnormalities and malformations.
Yet, Renee Case saw sweet Ivy on a special needs adoption
posting in the summer of 2017.
“And I could not get her out of my mind,” she says. “I just
knew there was something there. Now, we tell her that we found each other.”
Ivy is one of just 200 documented cases of Trisomy 9 Mosaic
in the world. She is being treated at Riley Hospital for Children at IU Health.
“She’s literally one in 100 million,” Renee Case says.
Ivy’s condition – sometimes called T9M -- is a chromosomal
disorder in which the entire ninth chromosome appears three times, rather than
twice, in some cells of the body. Mosaic indicates that some cells contain the
extra chromosome 9, while others have the typical two chromosomes.
To Renee Case and husband, Joshua, Ivy is perfect. The couple,
who live north of Warsaw, Ind., brought her into their home in August.
They had already fallen in love with another child with
special needs – their adopted son Jacoby.
And that love prompted them to seek out Ivy.
“It just felt right,” says Joshua Case. It felt right to
choose the path of caring for children with special needs. “There is a reason
we were supposed to be both of their parents.”
The reason? Well, it’s wonderful and beautiful. Both Jacoby
and Ivy are thriving, beating the odds of their prognoses.
“When your kid is blowing bubbles like this, that’s huge for
her,” says Renee Case. “It’s about finding the
Take sippy cups. Joshua and Renee went through more sippy
cups than they can count to find one that Jacoby, now three years old, would
use. His genetic condition causes sensory issues.
They didn’t know they were adopting a child with special
needs, not until after Jacoby was born. They met Jacoby when he was two days
old in the hospital. He spent 21 days in the neonatal intensive care unit
before going home with them.
When he was 9 months old, the Cases decided to do some
testing. They knew Jacoby had been born with microcephaly, a condition in which
the brain does not develop properly, resulting in a smaller than typical head.
He also had a two-vessel umbilical cord, rather than three
vessels, among other issues.
Jacoby’s genetic disorder is called Chromosome 16 p13.11
microdeletion syndrome. It is characterized by developmental delay,
microcephaly, epilepsy, short stature, facial dysmorphism and behavioral
And yet, all those things that were supposed to happen with
Jacoby either didn’t or are mild, Renee Case says.
He wears braces on his ankles. Jacoby got his first set
right before his first birthday and started walking weeks later. He has had
some speech issues and, emotionally, he is also delayed.
Yet, Jacoby is doing so many great things. On this day, he
is preparing to be line leader at his preschool the next day.
He knows – and talks about – every kind of dinosaur and
whale there is.
“He is so incredibly smart,” Renee Case says. “He knows so
much for his age.”
It’s evident Joshua and Renee Case are so very proud of
their children. They are masters at putting life in perspective.
Besides all those bubbles and smiles, Ivy is starting to
roll over a bit from back to side. At 10 months old, she is developmentally at
about four months old.
“Which is really good for her diagnosis,” Renee Case says.
“She’s just doing so good.”
The Cases didn’t know how Ivy would do when they took her
into their home last summer, adopting her from a family in Texas. But they
fought to find out.
For the first two months, Ivy had anywhere from two to five
appointments every week – doctors, specialists, therapists and evaluations.
What they ultimately discovered was better than expected.
Many of the issues, including heart problems, common to Trisomy 9 Mosaic aren’t
present with Ivy.
And yet, no matter what might come along for Ivy – or Jacoby
-- in the future, Renee and Joshua Case
will be there supporting them all the way.
“We were meant to be their parents,” Renee Case says. “We
were put into each others’ lives for a reason.”