Tag: Accessible Bathroom

Like all sweet little girls, Juana spent her early childhood dreaming of what she be when she grew up.  Her dream was to be a teacher.  She aspired to make a difference, share her knowledge and help others shine.  She loved playing with pencils, books, notebooks, chalkboards and crayons.  She had all the essential tools, enthusiasm, compassion and intelligence needed for the job.  She even had experience.  She loved taking care of all of the children in the family and babysitting was something she excelled at.

When Juana was fourteen, she was excitedly planning  her Quinceanera Party in Mexico.  This celebration was something she looked forward to every day with excitement and sweet anticipation.  Unfortunately, Juana became very ill and never got to enjoy her Quinceanera.  Juana had been sick for two weeks with what doctors had said was the flu.  It seemed to get worse and worse.  She was spending time with her sister Cecilia when she became critically ill.  She had fever, chills and nausea.  Then she developed a significant headache and became incoherent.  Cecilia took her to the ER.  It was a wild ride of examinations without answers before they finally identified the problem.  Her brain was significantly swollen due to encephalitis caused by an autoimmune disorder.  Her brain was so swollen that doctors had to induce a coma.

After five days in a coma, doctors said they did not expect Juana to pull through.  She was on life support and they asked the family if they wanted to disconnect her.  Her family chose to continue to fight for a miracle and three weeks later she finally opened her eyes and began to breathe on her own.  Juana never fully recovered.

Juana has endured brain surgery, experiences seizures, is in constant pain and has never regained her functional mobility.  She cannot walk or talk and has difficulty breathing.  Losing her abilities has been challenging for her and her family.  The encephalitis changed her life in a devastating way and has affected her both physically and emotionally.  Our goal is to bring Juana a whole lot of sunshine!  Lifting her spirits, making her smile and bring back some of her joy is our mission!

Photography by Niki Murphy Photography

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This sweet and sassy four year old is Kessley.  She is a delightful beauty both inside and out.  Everyone around her is blessed and energized by her presence.  She is not only cute, but also feisty.  This little fighter has proven that she is happy to be here and she will stop at nothing to live a fulfilled life.  She has been a fighter since day one. 

Following a healthy pregnancy, Kessley stopped moving in the womb at 38 weeks gestation.  Upon delivery, they found that this was due to the umbilical cord being wrapped tightly around her body which deprived her from oxygen.  Kessley was immediately intubated following birth.  She had a collapsed lung, needed a blood transfusion and was fighting for her life.  The doctors discovered that she had one very small underdeveloped lung, but the other one was working extra hard to sustain her life.  She had difficulty responding and as a last resort, the pediatrician gave her an epi-pen injection and by the grace of God, it worked.  Her lung inflated enough to get a chest tube in and she was stabilized well enough to be transported to the NICU via helicopter.  In the NICU, she was assisted in her fight for life by a ventilator, chest tube and feeding tube.  Although it was heartbreaking to see her like this, the specialized care helped her to recover and within a few days, she was able to breathe on her own.  Through an MRI, the neonatologist found that there was significant damage to the brain due to lack of oxygen.  He did not expect her to come off of the feeding tube or breathe on her own.  She proved him to be terribly wrong, though! She began therapy in the hospital and was discharged on day 13, breathing and eating on her own.  The tubes were removed and she got to go home.  She was quite the tiny miracle and began to flourish; overcoming obstacle after obstacle.

Kessley has Spastic Quadriplegia Cerebral Palsy with Dystonia, moderate bilateral hearing loss, Epilepsy, amblyopia and global developmental delay.  She wears glasses, hearing aids and uses a power wheelchair to get around and a communication device to make her needs known. She attends regular speech, occupational, physical and hippo therapy where she works diligently to continue to make progress.  She is an incredibly hard worker and it is paying off.

Kessley has a team of loved ones cheering her on and supporting her every step of the way.  One of her biggest fans is her eleven-year-old brother, Tate.  Tate has been by her side since day one and she has proclaimed that he is the best brother in the whole world.  Together, these siblings have hung the moon and will continue to reach beyond the stars.  With such great support, dedication and a strong will to succeed, the sky is certainly the limit!

Photography by Dinah Sutton Photography

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Juliana was born at 24 weeks weighing 1lb 6oz.  She survived on prolonged ventilator therapy and IV antibiotics for 5 months.  During her stay at the NICU she experienced numerous infections, a surgery for necrotizing enteric colitis, holosystolic murmur, patent ductus atreiosus and neonatal hypothyroidism.  This jovial warrior fought hard and survived all of these treacherous tribulations. 

Later, she was diagnosed with Cerebral Palsy, sensorineural hearing loss in the right ear and retinopathy of prematurity.  She has endured numerous surgeries including eye surgery and leg lengthening surgery. 

She has been in physical and occupational therapy for fifteen years and continues to focus on her functional targets.  She works diligently towards becoming independent.  She uses a walker in school and a wheelchair for long distances.  She has recently begun to ambulate more independently by holding on to furniture and walking.  This is a cherished sight in her home!  Juliana enjoys therapeutic horseback riding, buddy baseball and summer camp.  

This lively teenager is a miracle who has never allowed her disability to limit her from enjoying life.  She has radiant smile that illuminates the world around her. It was this amazing smile that landed her the role of being an extra in the movie Mother’s Day and also was in the video for TV Teacher together with her sisters.

As any typical teenager, Juliana fights with her sisters over the TV remote, loves technology and spends her time listening to music and watching videos on You-Tube.  She also loves using apps on her iPhone and tablet.

Photography by Kristi Weaver Photography

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Meet Alexas.  Her adorable nickname is Lexy, which fits her well.  She is bright, cheerful and is definitely a take charge kind of girl.  She is a ray of sunshine, not only putting a smile on the faces of those she meets, but also bringing sunshine and hope to others with Muscular Dystrophy.  

Lexy was born in 2007.  When she turned one, her mom realized that she was not progressing like a typical toddler and soon after, she had multiple medical exams that led to a devastating diagnosis of Spinal Muscular Dystrophy Type 2.  This disorder has brought with it medical complications such as pneumonia, low blood sugar, as well as multiple medications, several complex surgeries and the inability to walk. Lexy relies on her wheelchair to get around and machines to help her breathe and clear her lungs.

Although living with MD is challenging, she perseveres and shines as a leader.  She has served as a local Goodwill Ambassador for Muscular Dystrophy for the past 5 years. In 2015 she was nominated the state Goodwill Ambassador for Muscular Dystrophy. She and her team, Alexas’s Army, have participated in the Walk for MDA five years in a row in which her efforts have raised a significant amount of money for the MDA.  She and her mom promote awareness through speeches and networking at this event and within their community.

Although she sometimes questions why she has to live with MD, she has an amazing attitude and inspiring positivity.  Her will to survive and desire to contribute to the good of others is contagious.  This natural born leader loves going to school and adores art.  Her favorite thing in the world is American Girl Dolls.  

Photography by Birchfield Photography

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