Just one word: Raelin's journey
By Kenneth Fine
Published in News on October 7, 2012 1:50 AM
Raelin Rogers, 3, hugs her teddy bear in the room she shares with her sister, Kara. The little girl has a rare genetic disorder that has affected her development.
Just one word would mean so much to a woman who says a mother is all she ever really wanted to be.
So Jessica Rogers waits.
She dreams smaller than other parents.
She carries the emotional burden that accompanies a rare disease while her 3-year-old battles it.
She refuses to believe that her little girl, Raelin, simply might not do certain things -- talk; go to a regular school; fall in love.
"I don't think I'll ever give up on her," Jessica says. "I can't."
So she takes life one day at a time -- constantly coping with all that comes with 2p15-16.1 microdeletion, the rare genetic disorder her first-born child was diagnosed with shortly after her first birthday.
But as much as she loves her, it's hard.
"I wouldn't change her for the world, but I would be lying if I said I didn't wish she didn't have this disease," Jessica said. "It's kind of hard to explain. I love Raelin the way she is, because if she wasn't the way she is, she wouldn't be my Raelin. But I can't say I don't wish she didn't have these problems."
For Jessica, Raelin's birth represented a childhood dream realized.
"I grew up knowing that I was going to be a mom," she said. "It's what I always wanted to do."
So when her infant started missing milestones, she started to worry.
"She wasn't crawling or rolling or sitting up by herself, and she wasn't babbling. She didn't make that much noise at all," Jessica said. "So I started mentioning to (Raelin's pediatrician) that I was concerned that she wasn't reaching any of her milestones, but he gave me the whole, 'Every baby develops differently. It will happen in time.'"
Months later, not much had changed.
Raelin had been to a neurologist and had bloodwork done, but more testing, doctors said, was needed.
So they set up an MRI as a "precautionary" measure.
"They didn't expect to find anything," Jessica said.
Certainly not a chromosome disorder that, according to medical literature, only six people in the world have.
So when Jessica received the news, she was devastated.
"I couldn't talk to the lady when I found out," she said.
And to make matters worse, her husband, an enlisted airman stationed at Seymour Johnson Air Force Base, was deployed.
"Him not being here, it was horrible," Jessica said. "It was just awful."
Doctors still don't know much about 2p15-16.1 microdeletion.
"Usually, you get more questions than answers," Jessica said. "You have moderate to severe intellectual disabilities, delayed development and there are some clinical facial features, but that's about all they know."
And, as with many genetic syndromes, health issues have a tendency to surface frequently.
Since her diagnosis, Raelin has undergone open-heart surgery and two blood transfusions.
She has had kidney problems.
She is plagued by seemingly constant ear infections.
But through it all, she "does amazing."
And her strength, Jessica said, is inspiring.
Maybe that is why the little girl's mother fights so hard for her daughter -- why she refuses to give up on dreams for Raelin that other parents might see as certainties for their children.
"I want her to have a family. That's my dream. I want her to fall in love. I don't want to say normal, but that's what I want. I want her to have as normal a life as possible," Jessica said. "You know, I always dreamed about what my kids' lives would be like when they got older -- going to school, having a family. You just think about all the great things they are going to be able to do, to accomplish. Well, that's probably not going to be how her life is going to be, but I won't give up on her."
Raelin reaches skyward.
"She loves hugs," Jessica, says. "Sweet girl."
The mother smiles.
Years ago, doctors might not have foreseen Raelin walking around or looking up with her arms extended.
"I give all the credit to therapy," Jessica says.
Since her diagnosis, the 3-year-old has seen play, speech and occupational therapists.
And she is developing faster than the experts predicted.
And if her parents can find a way to get her the iPad and special applications her therapist says could make a huge difference in her ability to learn, there is no telling what the little girl will do next.
Jessica has a hope.
Just one word.
"I'm not gonna give up on her talking. I wanna hear, 'Mama,'" she said, choking up. "Oh God, do you know how much I wish I could hear her say, 'Mama?' That would be amazing."
Interested in helping the Rogers family buy the iPad and special needs applications Raelin needs? Call 919-739-7841 for information on how you can help.