Your Stories: Differing Abilities

When Parents featured Emily Keicher, 3, on the cover of our February 2013 issue with her gold-colored walker, we received an overwhelming number of responses from readers sharing their personal experiences raising children of differing abilities. These stories drew our attention to some of the many conditions affecting children nationwide. In the following pages, we highlight several of these children and provide links so we can all learn more about their diagnoses.

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February cover model Emily Keicher, 3
Born with spina bifida

Everything about Emily sparkles, from her shiny gold walker to her bright smile to the mad dancing skills she brought to our photo session. But the glow really comes from within. Emily's mom, Elizabeth, told Parents at our shoot that one of the hardest things about being the parent of a child with a disability is when people stare from afar. Your child feels that stare. Elizabeth likes the approach little children take when they see Emily -- they're curious, not judgmental, and they start a conversation. The condition Emily has, spina bifida, affects one in 2,500 children. It damages the nerves and spine and often causes learning disabilities. There's lots more we can all learn about this and other disabilities if, like kids, we just ask.

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Life with Spina Bifida

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Luke Levandusky, 8 months
Born with osteogenesis imperfecta Type IV (brittle bone disease)

My son, Luke, was born with osteogenesis imperfecta Type IV. This was our first child and we had never heard of the disease. Luke had about seven broken bones in his first two months of life. We were told he will never walk and will be around three or four feet tall. We have accepted Luke's condition and are doing everything we can for him. He receives biphosphonate infusions every two months to strengthen his bones and decrease his fractures. We're not sure what the future will bring, but we are enjoying the moment now. He is a very happy, fun baby!
Stephanie Levandusky; Brunswick, OH

For more information visit Osteogenesis Imperfecta Foundation or the Kennedy Krieger Institute Osteogenesis Imperfect Clinic.

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Mason Scheiwe, 5
Born with proximal femoral focal deficiency (PFFD)

My 5-year-old son, Mason, was born with a congenital limb difference called proximal femoral focal deficiency (PFFD) and wears a prosthetic leg to compensate for his short right leg. He often uses a walker when he's in a cast after one of his many surgeries. Parents need to teach their children that it's okay to look and be curious, but to just ask. I'm more than happy to explain it and Mason is, too (most of the time, if he's not busy playing with his toys!).
Melissa Scheiwe; Navarre, FL

For more information visit The Pediatric Orthopaedic Society of North America.

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Dylan Jon Parisi, 5
Diagnosed with partial agenesis of the corpus callosum and genetic duplication of gene 5

Dylan was diagnosed at 10 months old and his condition is so rare that no one knows how he will progress. My little man is living proof that you don't need words to express yourself. He is nonverbal and does not stand or sit or walk independently, but his disposition is happy. He is so full of life and joy. His energy is magnetic and he owns a room when he is in it. He attends a special needs school in Cedar Knolls, NJ, and receives several therapies (physical therapy, occupational therapy, speech therapy) on a daily basis. He is our inspiration every day and we fight to give him everything he needs to make his life the best it can be.
Maria Parisi; Somerville, NJ

For more information visit the National Organization for Disorder of the Corpus Callosum.

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Haley Clark, 5
Diagnosed with cerebral palsy with spastic dysplasia

I am a proud mother of a 5-year-old daughter who has cerebral palsy. She has the same walker and AFOs (leg braces) as Emily! She is the light of my life and every day I am humbled by her strength and the struggle that she endures to accomplish most things that we take for granted.
Sandra Clark; Port Huron, MI

For more information visit My Child™: The ULTIMATE Resource for EVERYTHING Cerebral Palsy™.

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Julie Claire Sarsland, 6, Anna Sarsland, 2, Caleb Sarsland, 8, and Gabe Sarsland, 3
Born with cleft lips and/or cleft palate

I was born with a cleft lip and now have three children affected by cleft lip and palate. Caleb and Gabe were both born with cleft lips and cleft palates, and Anna just had the cleft palate. This is something that affects the face and causes lots of people to stare or make strange comments. Cleft lip is the most common nonhereditary birth defect, affecting approximately 1 in 1,000 Caucasian babies. In my family, it actually is hereditary as I have a rare syndrome called Van der Woude. I want to show people that children with a cleft lip are beautiful!
Jennifer Sarsland; Amidon, ND

For more information visit Cleft Palate Foundation.

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Mikaela Hohler, 2
Born with a visual impairment due to albinism

My daughter has a visual impairment due to albinism. Too often we forget that these children are still people with feelings. Too often we define people based on their disability. We have to remember that the disability doesn't define the person. Person first, disability second.
Tracy Hohler; Dublin, CA

For more information visit The National Organization for Albinism and Hypopigmentation.

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Hayden Capela, 7?
Diagnosed with Fragile X syndrome

Our son Hayden was diagnosed with Fragile X syndrome at 17 months. I would say that his most prominent feature is his smile. Hayden is happy, charismatic, and loving. There definitely needs to be better awareness so parents know how to speak to their children, and consequently children know how to speak to other kids. I could not agree more that we can all learn more and understand better if we simply ask.
Cara Capela; Andover Township, NJ

For more information visit National Fragile X Foundation or FRAXA Research Foundation.

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Apollo XIV Bergeron, 2
Diagnosed with a double aortic arch

My two-year-old son, Apollo, was diagnosed with a congenital heart defect at age 18 months called a double aortic arch. Apollo's heart defect is rare -- it accounts for less than 1 percent of all heart defects. He has had two heart surgeries and a g-tube placed in 2012.
Renee Bergeron; Bellingham, WA

For more information visit Cove Point/Johns Hopkins Children's Center Patient Education for Congenital Heart Disease Site. To read more of Apollo's story, visit his mother's website at A Baker's Dozen and Apollo XIV.

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Ezri Leona Piper, 1
Born with spina bifida

My daughter, Ezri, was born premature last year with spina bifida. Thanks for remembering the kids with special needs.
Cindy Piper; Zeeland, MI

For more information visit Spina Bifida Association.

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Rocco DiPalma, 16 months
Born with congenital cytomegalovirus

My son, Rocco, was born with congenital cytomegalovirus (CMV) and has several complications due to this very common virus, including microcephaly, hypotonia, and global developmental delays. He is also deaf, although he has bilateral cochlear implants. Each year, 1 in 150 children are born with CMV. Unfortunately, there is little awareness about CMV, which is a shame, because simple steps like washing your hands often with soap and water can stop the spread of the virus.
Nicole DiPalma; Brooklyn

For more information visit The CMV Action Network and Rocco's page.

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Anne Farrell, 40, with sons Liam and Ethan Farrell
Born with microtia

I am a mommy to two amazing little boys. I was born without my right ear, and I am partially deaf. I endured stares from afar and curious questions as a child. Despite difficult surgeries and some insensitive remarks, I have lived a happy and blessed life. Many people have not even noticed my ear until I tell them. That is what I want most -- for people to notice the person I am, not my birth defect.
Anne Farrell; Midlothian, VA

For more information visit Microtia-Congenital Ear Deformity Institute.

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Jovie Douglas, 1
Diagnosed with sensorineural hearing loss

Since June of last year, Jovie has worn hearing aids in both ears. As parents, we hate to think of our kids going through anything challenging or difficult. From the first day we started our journey with this adjustment, we wanted to make sure Jovie grows up knowing she is just perfect the way she is.
Amy Douglas; Hamilton, OH

For more information visit Hearing Like Me or American Speech-Language-Hearing Association.

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Corbin Graszat, 4
Diagnosed with cerebral palsy

My 4-year-old son, Corbin, has cerebral palsy and uses a walker. I think we live in blessed times, when children with disabilities are not hidden away, but are celebrated for the different beauty they possess in body and in spirit.
Tina-Marie Graszat; Shannonville, Ontario, Canada

For more information visit My Child™: The ULTIMATE Resource for EVERYTHING Cerebral Palsy™.

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Chloe Anna Stephens, 4
Diagnosed with Sotos syndrome

Chloe was diagnosed with Sotos syndrome at 6 months. Our first indication was that her head circumference began to increase rapidly, which was found by her pediatrician upon her well-child visit. After a trip to the neurologist at East Tennessee Children's Hospital in Knoxville, TN, she was diagnosed with Sotos. Chloe has annual visits now with a cardiologist, neurologist, opthamologist, and gastroenterologist. The best thing we can do for her now is therapy. She receives speech therapy, occupational therapy, and physical therapy. She is the sweetest child and very happy.
Mike Stephens; Ewing, VA

For more information visit Genetics Home Reference or Sotos Syndrome Support Association.

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Jack Dalrymple, 2
Born with tricuspid atresia

Our son, who is now 2, was born with a severe congenital heart defect called triscupid atresia. Thank you for bringing awareness to these important facts and for creating a social environment where all abilities are celebrated and accepted.
Cara Dalrymple; Yelm, WA

For more information visit Boston Children's Hospital.

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Caleb Showalter, 19 months
Born with Down syndrome

As a mother of a child with Down syndrome, I want to spread awareness of those who have a little something extra, as my Caleb does. His diagnosis was a surprise to us, but the unconditional love we felt was not a surprise. He captured our hearts the moment we looked into his amazing almond shaped eyes. Caleb has faced a few health issues (heart defects, asthma, GER) and his perseverance never ceases to amaze us. He possesses a determination that is unmatched. We witness this every day as he combats his hypotonia (low muscle tone) and hypermobility (extremely flexible joints) in an effort to move and navigate his environment. We are a better community as we learn to appreciate differences. My little miracle man changes perceptions each and every day!
Nicole Showalter; Mountville, PA

For more information visit National Down Syndrome Society.

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Cali Brannon, 6; Mia Brannon, 3
Born with cleft palate/cleft lip

I have two beautiful daughters adopted from China who were born with cleft palate/cleft lip. Both girls have an incredible spirit and have endured more than most of us do in a lifetime. I always want them to know they are beautiful inside and out. They have brought joy to our family.
Jody Brannon; Carey, NC

For more information visit cleftline.org.

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Eleanor Hartlage, 10 months
Born with spina bifida

I am the mother to an amazing 10-month-old little girl with spina bifida. She was born at 25 weeks, but you'd never know it. Traditionally, the repair for the lesion caused by spina bifida has been done postnatally, but we opted for in-utero repair. Unfortunately, this approach can cause premature birth, as was the case with Eleanor. We intend to parent Eleanor with the mind-set that everyone has something they deal with. We've taken our baby out in public with an oxygen tank (it's gone now) that she used due to her premature birth. We've also taken her out with casts on her legs, and now with ankle braces. We sometimes find people staring and I would encourage everyone everywhere to stop staring and to start a dialogue.
Stacy Hartlage; Louisville, KY

For more information visit Spina Bifida Association.

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Lauren Rich, 3
Diagnosed with right hemiparesis

My daughter, Lauren, is 3 years old and she was diagnosed with having had a stroke in utero. As a result of the stroke, she has right hemiparesis. This makes the right side of her body weak. Lauren is asked by strangers, almost daily, "What happened to your arm?" Lauren replies, with a beaming smile, "I had a stroke."
Rebecca Lee Rich; Normal, IL

For more information visit Children's Hemiplegia and Stroke Association and search "hemiparesis."

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Luke Martine, 9 months
Diagnosed with congenital central hypoventilation syndrome

In April, my husband and I welcomed our third son, Luke, and were instantly thrown into a world of worry and chaos. Luke was diagnosed with an extremely rare genetic disorder called "Congenital Central Hypoventilation Syndrome" (CCHS) shortly after birth. There are roughly 1,000 cases in the world, 300 of which are in the United States. It is a puzzling condition in which the majority of affected individuals are fully functional when awake but then hypoventilate, or stop breathing, during sleep. As a result, most CCHS children have a tracheostomy and must rely on a ventilator any time they close their eyes, with more severe cases being ventilator dependent around the clock. Some are lucky to transition to a BiPAP mask as they get older (like those treated for sleep apnea), but, unfortunately, not all. This is a lifelong condition, yet does not prevent most CCHSers from leading virtually "normal" lives!

For more information visit CCHS Family Network.

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Nathan Farris, 5
Born with Down syndrome

As a parent of a child with Down syndrome, I know that parenting is not always about raising "typical" children. I love my son and I really, really do not know what I would do without him. We have had our moments, but haven't all parents? We have had our ups, downs, joys, laughter, achievements, and love. Nathan is a child first and his disability is second. I think the better people are educated about this, the better they understand.
Susan Farris; New Berlin, WI

For more information visit National Down Syndrome Society.

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Shea O'Machel, 8
Diagnosed with cerebral palsy

I have a daughter who is 8 and uses a walker as a result of cerebral palsy she suffered after contracting whooping cough as an infant and losing oxygen. My daughter does not have any cognitive delays, only a physical disability, so people's words and stares really can be damaging. We have so much to learn from kids who struggle, and from their example of strength and happiness.
Patty O'Machel; Deerfield, IL

For more information visit My Child™: The ULTIMATE Resource for EVERYTHING Cerebral Palsy™.

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Kate Scarbrough, 7
Born with spina bifida

Our daughter has spina bifida. She is now 7, doing very well, and has progressed in ways we never thought possible. Children with special needs are sometimes left out. Parents of typical children don't always see how isolating it can be for the parents of nontypical kiddos and it's not their fault. These children are sometime put in a box unnecessarily. We are incredibly proud of our daughter, and thankful. Most parents of special needs children would welcome (I know I would) a question like, "Does she need a little help walking?" or "Oh, I didn't realize she had ankle braces. Are her ankles weak?" That sparks a conversation, even if it's brief. These children are dealing with things most of us won't deal with in a lifetime. My daughter went through nine surgeries before the age of 6 months. These are incredibly strong little people who will grow up to be incredible adults with a lot to give.
Riche' Scarbrough; Bay Village, OH

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Emma A., 2
Diagnosed with left ventricle non-compaction (LVNC) cardiomyopathy

We took Emma to the emergency room at age 4 months. As the treatment unfolded, she was diagnosed with LVNC cardiomyopathy. She acquired subglottic stenosis due to scar tissue in her trachea because she had to be intubated for approximately two weeks. She also is unable to feed by mouth and takes her nutrition via gastronomy tube. We took her home after about two months in the hospital. The doctors hope to treat the stenosis this summer and she has just been cleared to feed by mouth as well. Emma has been through a lot, and continues to, but we are happy she is staying happy through it all. Our faith and prayer has kept us strong and positive through this ordeal.
Vivien A.; Katy, TX

For more information visit The Cardiomyopathy Association

Copyright © 2013 Meredith Corporation.

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