click any photo to view this story's photo gallery
published: Friday, April 26, 2013
'Do not give in, do not give up'
By SAMANTHA GHOLAR
SEBRING - A parent's job is a lifetime commitment. If they are fortunate, their children will live a full, healthy life of laughter and smiles with maybe a few hard-learned lessons, plus a handful of mistakes and misadventures mixed in.
But some parents are dealt a different set of cards from day one, making that laughter and those smiles even more cherished.
From the day she gave birth to her daughter, Kenna, until today, Jennifer Stephens has had to sacrifice nearly everything to be a mother to an ailing young daughter. And she doesn't regret a single minute of it.
"There's just something so amazing about special children," Stephens says of 4-year-old Kenna.
Special needs parents like Stephens often begin to feel lost and alone in the fight to raise children who suffer from special and rare diseases and conditions like Kenna, who was diagnosed recently with an unspecified form of mitochondrial disease. The condition is caused by failures of the mitochondria (compartments present in all cells of the human body with the exception of red blood cells).
"We are still waiting on an exact diagnosis on Kenna. What we do know is that she has a mitochondrial disease, (doctors) just haven't pinpointed her exact type," Stephens said.
According to umdf.org, mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. Mitochondrial disease affects cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
That means Kenna's body is unable to function properly.
"Her intestines are basically paralyzed," Stephens explained. A feeding tube is permanently placed in Kenna's stomach to help with food and digestion.
Kenna has become a case study for a third copy of ataxia ocular motor apraxia type 1, a condition that makes her motor skills severely delayed, causing her body to be unable to eliminate waste on its own.
Kenna's body is unable to perform simple tasks that so many people take for granted. Things such as walking, speaking and sometimes even digestion become huge tasks for the mother and daughter.
A slew of doctors, specialists and therapists are all on speed dial and on first-name basis with Stephens. Although she is thankful for the help, it has not always been easy getting the help they need.
"Doctors are not God. All that they can do is give you a diagnosis based on what they think is wrong with your child based on the symptoms and tests run. Do not take what your doctor says to heart," Stephens said. "You have the right to explore a second, third, even a fourth opinion until you are confident that you have met the right doctor for your child."
After hitting a brick wall with treatment and diagnosis in Florida, Stephens began frequenting a specialist in Boston last fall. Finding a specialist and a team she has grown to fully trust helps, but the recent diagnosis still does not fully explain a number of things that are taking place within her daughter's body. Research has become Stephen's newest past time. She spends hours on end trying to fill in the information gaps.
"We are living in a generation and world of technology. Take full advantage of it. Learn your child's diagnosis inside and out. Know your child's medications inside and out. Keep a list of side effects and study up on interactions. Familiarize yourself with alternative treatments -- holistic, therapeutic, etc. I've found that some of these help tremendously," Stephens said.
Though Kenna's diagnosis may mean that her life expectancy is short, Stephens takes everything day by day, cherishing her daughter's continued progress, however little it may be.
"Do not give in, do not give up. No one knows how your child's story is to begin and end and how the chapters in between will play out other than the great author of life," Stephens said. "Don't be afraid of him or her. Don't be afraid of the illness. Don't live every day thinking that any day could be his or her last. Stay positive, even if it's the hardest thing to do some days. Your child is only as good, positive and happy as you are. Never give up, because you are most definitely not alone."
Stephens has begun forming support groups and meeting up with other special needs parent in the Tampa Bay and Heartland area. She is currently organizing a march for mitochondrial disease awareness in Tampa. Though the mother of three has an overflowing plate, nothing has ever stopped her from doing her duty as a parent.
"There will be days that you don't want to get out of bed, that you can barely stand the thought of walking into another doctor's office, barely stand to look at another med, but push through," Stephens said.
"Feel proud, you are a chosen one. You were chosen to love and care for the most special of human kind. Embrace it and let it change your life for the better. I promise, no matter the outcome, you will be grateful to have had every single moment with that child."
don't give in, don't give up (by: Mary Gholar - 4/26/2013)
Great life story ,wha a mother. God give you strengh,I love you
(by: Blindman~ - 4/26/2013)
I admire Jennifer's fortitude in managing what to many would be daunting. Not to mention all that Kenna goes through every day, good times or bad. Modern medicine may work wonders, but it also takes courage for a 4-year-old to go through what has been described here. The parent sets the example, lives by it, and the child follows. Yes it's the courage displayed by Jennifer that enables Kenna to overcome the every day difficulty, danger, and pain of a rare condition and go on to live an amazingly happy life. I just love the mother & daughter photos. You two are so beautiful and absolutely amazing.
(by: Amanda John - 4/26/2013)
What a beautiful mother and daughter! Great article and thanks for sharing!!
Small Banner Ads