As parents, we all worry about our kids. Are they driving safely, keeping their grades up and treating people right?
For parents of special needs or sick children, the worries are much larger. They are often dealing with life and death issues.
That is why Memorial Hospital's upcoming Hearts of Gold Walk a week from Saturday, February 9, at University Park Mall is so important. It helps these children live the best lives possible.
Tuesday night in a special Medical Moment Just Before Six you will meet Bryanna. An eight year old, with an infectious giggle, who has been fighting and winning against all odds.
Bryanna Sikora has had weekly therapy since the day she was born there nearly eight years ago at Memorial Children's Hospital.
Born to a mom who abused drugs and alcohol, Bryanna came into the world with a host of problems. She was adopted by Cindy and George Sikora.
“She did not know how to suck or swallow at birth so she had a feeding tube in place,” explains Cindy Sikora Bryanna's Mom. “She had a major event when she was two months old and had to have the trach placed. She has cerebral palsy and she has a right foot amputation.”
Some might wonder why the Sikoras would adopt a child with such severe handicaps.
Already foster and adoptive parents to an adult son, Shawn, Memorial called and asked the Sikora's if they could give Bryanna the care she needed, not knowing how long she would live.
Cindy says it was simple.
“We went to the hospital and met her and the rest is history,” explains Cindy. We fell in love with her the moment we saw here. She's been an absolute blessing.”
She has been a blessing that has had a lot of needs and a lot of feistiness in her. She has never eaten a meal and can only communicate by using a computer device. The device allows Bryanna to introduce herself to others.
Giving a child who in years past would have been voiceless now has a voice of her own.
The speech, occupational and physical therapy she has been working with at Memorial Children's Hospital over the years has helped shape her into the bright little Olive Elementary second grader she is today.
“We are just forever grateful that they gave her that chance,” says Cindy.
With her, from the start, has been Occupational Therapist Chris Wilson.
“She was a tiny little baby in NICU and went through a lot of different things from being born early,” says Occupational Therapist Chris Wilson.
Each Wednesday Chris, who works on Bryanna's positioning for sitting and sleeping and reaching for objects and Speech Therapist Christy Bartek work together with Bryanna.
It is obvious that this trio has quite the relationship.
On our visit to therapy Christy was working with Bryanna on her mouth muscles in the hope that one day Brianna will be able to eat. They start with a device called Therabite.
“Using the Therabite helps to open the muscles to make it get a little easier to help her mouth movement,” explains Christy Bartek Bryanna’s Speech Therapist at Memorial Children's Hospital.
Moving on from that to a brush, and Bryanna makes it clear the number of reps she can do.
Now Bryanna gets to try and close her mouth around a sucker. Something most kids take for granted, remember this child has never eaten a meal. Things that would be so simple for most are milestones for Brianna.
For Chris and Christy helping Bryanna over the years has been a labor of love
Christy: “She has made huge leaps and bounds and she is probably one of the most incredible little girls that I have ever encountered,” says Bartek. “It has been amazing, just her personality is so amazing to see because she is so smart and so quick.”
She is also quick witted. She may not be able to talk but she can still tell jokes.
And while we were having some fun and games, Christy reminds us how this device allows a child whose voice is otherwise locked in her body can communicate.
“We knew although her body was not letting her talk, we knew she had a lot to say so once we found the right device, which is what she is using, Advantage Light, she talks all the time,” says Bratek.
She is able to surf the web and do her homework and communicate with her classmates as well.
For Cindy and her husband, given them a child they might not have had without the care she's received at Memorial.
“It is all those people working together as a team and thinking that she deserved to have that chance,” says Cindy. “We would not have experienced all that we have with her in these eight years without it. She brings so much joy and pleasure to us every single day. I cannot imagine her not being in our lives.”
Thanks to the expert care Bryanna has gotten over the years at Memorial, they do not have to.
Bryanna and her family will be taking part in the Hearts of Gold Mall Walk a week from Saturday at University Park Mall.
Pediatrician Dr. Robert Sweeney and I will kick off the walk and hope that you can come and support the walk.
You can come up with your own team of support. Bryanna's team is called Jerzee's Pride, the name given Bryanna by her birth mom.