Texas Childrens Hospital - Grace Under Fire

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An inspiring educational exhibit presented by Texas Children’s Hospital and Karen Sachar

An inspiring educational exhibit presented by Texas Children’s Hospital and Karen Sachar For 63 years, Texas Children’s Hospital has existed for one purpose—to create a healthier future for children and their families. We care for thousands of children each year and have the privilege of seeing many of them grow from infant to toddler and child to young adult. To celebrate some of these children we have partnered with photographer Karen Sachar to create an inspiring and educational exhibit.

These photographs and stories are of children and young adults who have been impacted by genetic and neurological diseases. They are treated and cared for in every part of our hospital, from the fetal center and NICU to our genetics and neurology clinics; from our Autism Center and Down Syndrome Clinic to our Physical Medicine and Rehabilitation Clinic. They are also the inspiration behind the Jan and Dan Duncan Neurological Research Institute, where our goal is to translate basic scientific research into effective treatments – and one day cures – for genetic and neurological diseases.

Children with special needs are in every facet of our society and hospital. We invite you to see these children as we see them, and to celebrate their beauty and grace with us.

ARTIST STATEMENT

“Grace Under Fire.”

The Grace.

These children have been given the gift of grace—the gift of awakening humanity.

Their soulful offering is to assist us and our human nature in embracing the true meaning of surrender, compassion, humility, joy and unconditional love. Doubt does not exist in the mind, heart or spirit of these children. Life just is. They teach acceptance, patience and survival. These children are the epitome of grace, and their families walk in the light of this grace each moment of every day. These children are our teachers.

It’s time to see these children for who they are, rather than who they are not. To recognize their beauty, charm and gifts. They are smart, enthusiastic, happy and frustrated. They embody a beautiful innocence that has seemingly been lost on those living in our fastpaced, demanding, technological world. There is no sense of entitlement in who they are.

There is a sense of purity. They are simply a breath of fresh air.

There is no need to apologize for the challenges these children face. What is necessary is recognition of their gift of grace, and an understanding that, when empowered, their gifts will allow them to realize their full potential. With high expectations, perhaps one day they will speak, experience physical peace and a cure will be found for all neurological conditions.

The Fire.

The lifestyle for these parents and siblings is challenging, yet they all persevere. Their expectations for a cure are relentless. Their perpetual commitment to the wellness of their loved ones is undeniable. It is exhausting and rewarding. It is heartbreaking and fulfilling. They all rely on the partnership of love and hope to get them through each day.

Thank you to each and every family member for opening your hearts and your homes to me and my camera. I will treasure our time together and stories you have shared.

Karen Sachar

Meet Kayla. Kayla is 13 years old, and lives in Houston, Texas. She is the daughter of Lee and Roberta Schwartz and teenage sister to Kena. Since 2013, Kayla has attended summer camp for seven weeks each year at Camp HASC in New York. While at camp last summer, Kayla and Kena both celebrated their B’not Mitzvah with their parents, grandparents and camp comrades, all of whom came together to commemorate the sister’s rite of passage.

Kayla, like most teenage girls, loves wearing Sephora makeup, having her hair blown dry and wearing sassy chic dresses like the one she recently wore to her cousin’s wedding. She loves dancing to music and lying in bed listening to TV (Elmo is among her favorites). Kayla’s lifestyle has all of the ingredients of a curious teenager. Her parents call her their butterfly. Though she does not have much strength in her hands and does not speak the same language as most, her strength lies in the power she has to inspire happiness with her universal language of love.

Everyone who spends significant time with her is changed forever. They confide in her, recognize how smart she is, and gain strength just from being in her company. To those who know her, this is her superpower.

Medical condition: Rett syndrome

“ Others gain strength just by being with Kayla.

That is her superpower.”

— Kayla’s Mom and Dad

Meet brothers Jake (15) and Eli (12). I first met the Sukin family early in my career at Fleming Park. At the time, their son, Jake had not yet been diagnosed with a neurological disorder.

Years have passed and Jake’s welcoming smile is as big now as it was at 18 months. His tenacity and “spicy” persistence are still his guiding force. They have fueled his motivation to crawl, stand and walk by age six. He now even rides horses in the Houston Livestock Show and Rodeo Top Hands Show. He loves to ski and with each trip approaches the challenge with all of his heart and might. He refuses to give up.

Known for his sense of humor and smile, Jake is in charge of “spirit” for his basketball team. He makes it a point to high-five each team member after every game before they all hit the showers.

Eli, like his brother, is relentless in his pursuits. “He is a happy-go-lucky guy who LOVES school, his teachers and other children. He is the sweetest child, without a mean bone in his body.” Skiing trips to Montana and the snowy mountains of Big Sky are where Eli truly finds his bliss.

Different disorders, brothers of the heart, heroes to many.

Jake loves Michael Jackson and YouTube on his iPad. Eli loves the fast-paced movement of planes, trains and automobiles. Both boys bring meaning and perspective to the lives of those around them. As their mother, Debbie, has expressed, “Our children are pure, and we are here to help them be the best they can be. They have brought meaning and perspective into our lives and have taught us the importance of patience—patience for our children, each other and the world around us. While our life is crazy, it is our norm, and we love our family.”

Medical condition: Angelman syndrome (Jake); Altered CASK gene (Eli)

“ Sugar and Spice and everything nice, that’s what these boys are made of.”— Jake and Eli’s Mom

Meet Rachael. I have no doubt that Rachael is here to remind the world that the power

of a smile is inspiring. With Dad by her side, and bright flowers on her dress, Rachael thoroughly embraced the excitement of having her portrait taken. Although she responds with a contagious silent giggle when stimulated by Dad’s tickle, it is she who tickles those who know the magnitude of her expressive grin and the pure light in her eyes. “God does not make mistakes,” says her father. “Rachael is Rachael for a reason, and that reason is to teach, serve and love unconditionally without question.”

Her mother, Kenna, agrees. “Rachael has taught us that a smile is worth a million words and that you can love someone so much—more than anything in the world—even if you can never, ever hear her voice. She loves Cookie Monster—LOVES Cookie Monster!! She loves Disney World, going to the beach in Delaware and being fed ice cream on the boardwalk as the wind blows through her hair and the seagulls flock around her.”

Kenna knows that Rachael has made their entire family better. “We have, I hope, a much better perspective of what is important in life. Our 17-year-old son, Ethan, has a special bond with his sister—I know she is going to miss him greatly when he goes away to college next year, yet he will probably miss her more.”

Medical condition: Rett syndrome

“ Rachael is here to teach, serve and love unconditionally.”

— Rachael’s Dad

Meet Dash. Dash brings great joy to the world and to the hearts of all who know him. He

is 23 months old, and his enthusiasm for life is absolutely boundless. The poem “The Dash” by Linda Ellis, is the inspiration for his name. It references “the dash” as the most important part of a gravestone, for it represents everything that happens between the date of birth and the date of death—that is, it represents a life well lived. Without any doubt, Dash is a true gift to those who know him. He radiates pure joy and happiness; he will tickle your soul and dance with your heart.

There is a magic about him which allows life to be beautiful in his world, so why not let it be beautiful in ours?

“We are proud to say that Joseph Dash is our brother. If we see other people with Down syndrome, we feel happy and smile! We know that even though they may have a disability, they are still like everyone else!” —Maya and Emily Van Zandt (Dash’s sisters) Medical condition: Down syndrome

Dash – living life well.

Meet Charles. Charles is 18 years old and attends Memorial High School in

Houston, Texas. He loves to ride his bike, look at books, swim, watch movies and go out to eat Mexican food. He loves his brother, Nate.

Their brotherhood provides a great strength to both of their lives. Nate’s life with Charles has unveiled Nate’s true passion. He is already headed to medical school in his heart and supports his mom in her impassioned efforts to find a cure. As their mother says, “Charles is one of the sweetest people you will ever meet! He doesn’t have a mean bone in his body. Though he can’t speak, he tells us so much through his expressive eyes, smile and big dimples.”

As a result of his genetic condition, Phelan-McDermid syndrome, Charles has both autism and epilepsy that has caused thousands of seizures. As a result, he has endured countless injuries and the gradual loss of speech and other hard-won skills. “Sometimes it seems unfair that so much suffering would befall a single person,” his mom says, “but Charles has retained his joyful nature and a resilient spirit. How can we not be inspired to do our best for him?”

Medical condition: Phelan-McDermid syndrome

“ Since I was in second grade, Charles has inspired my passion for the research and science of neurology. It makes me think, ‘How can I fix things for not only Charles, but also for other kids like him?’” — Charles’ brother, Nate

Meet Logan and Hunter, TWINS! Meet Logan and Hunter, born

August 13, 2009. Logan was born first. They are sisters who share a birthday, their mom’s love and the struggles of Autism. Therapy and their therapist are a big part of their lives, as they are for most children with neurological conditions. They all share in big and small victories together, one day at a time. Hunter’s therapist, Stephanie, says, “Hunter has taught me that teaching even the smallest thing can make the greatest impact—but most of all, she has taught me to teach with love.”

Hunter, Logan and their mom, Kendal, share a unique relationship with a friend of the family, Dale, and her granddaughters. “When my oldest granddaughter wondered why the girls did not talk to her, I told her that it was difficult for them and that everyone’s brains work differently—to which she replied “oh” and has never asked again. When she sees Hunter and Logan, she accepts them for who they are. This year in school, one of my granddaughter’s best friends is a boy with autism. I would like to think that meeting and knowing Logan and Hunter have contributed to her absolute acceptance of being just the way God made them.”

Medical condition: Autism

“ The girls have changed my life forever. Being their mom is the most rewarding experience I could have ever asked for.” — Logan and Hunter’s Mom

Meet Carena. Carena is an artist. Her artwork is her voice. I have known and

photographed her for almost 15 of her 19 years. She taught me early on that it’s ok to talk to her, that she is listening. She taught me to give her space when she needed it and was never shy about letting me know when she was through with our sessions. Carena always reminded me with her encouraging smile that she has a full and grateful heart, and I have always sensed she was hopeful I would discover that in others.

She made it safe for me to be her friend and to befriend others like her. Carena is a beautiful and expressive young lady. Her non-verbal communication is poignant. And just like her mother Cynthia, Carena is gracious, strong, determined, focused and a fashionista. From Converse sneakers to couture, she wears her clothing and her life well.

With cerebral palsy and profound developmental challenges, Carena, amidst the unwavering support of her parents and caregivers, has grown into someone who knows what she likes and what she doesn’t, someone who can now move independently with her walker and express herself freely. Her mother calls her a “meditation in motion,” for when raising a child, at times it helps to breathe deep, find your center, let go and remain calm against our nature.

Medical condition: Cerebral palsy / Unknown neurological condition

“ Meditation in motion.”

— Carena’s Mom

Please consider making a donation to the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital.

With your generous support, together we can help create a community of healthy children.

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© 2017 Photographed and produced by Karen Sachar & Co., Inc. All rights reserved.