Every child we help is called an Arya Kid. They have inspiring stories that prove anyone can overcome challenges. Read about a few of the children we have helped and how they are turning challenges into opportunities. It will definitely bring a smile or maybe even a tear of joy to your face.
Meghan was diagnosed with Hydranencephaly, a rare condition that is also considered a Cerebral Palsy Disorder. Her brain did not fully develop. After showing several signs of developmental delay, an MRI was done on Meghan. It showed a significant part of her brain was missing, resulting in the diagnosis of Hydranencephaly.
Meghan is nonverbal, cannot crawl or sit up on her own, has occasional seizures, has a cortical visual impairment, oral delays, and vomiting issues, and is fed solely by g-tube. She has a shunt because cerebral spinal fluid accumulates in the empty part of her brain.
Meghan is now in Kindergarten and with a lot of support and therapy is doing well there. Meghan uses two special chairs at home; one of them is a Special Tomato chair. Meghan is growing a lot and now has a larger seat and back for her Special Tomato chair from The Arya Foundation.
Elisabeth was born with a complex congenital heart defect that required her to undergo open-heart surgery. After surgery, Elisabeth suffered serious post-op complications which led to more heart procedures and becoming dependent on a breathing machine for 55 days to keep her alive. During one of the heart procedures that followed after her surgery, Elisabeth developed a blood clot that traveled to her brain and led to a massive stroke that paralyzed her on the left side of her body.
Since the stroke, Elisabeth has fought tirelessly to achieve every milestone that comes so naturally for other children. From rolling over and clapping to standing up and, ultimately walking, Elisabeth has chartered her own path to mastering each goal. Elisabeth has spent the better part of her life in hospitals, doctors offices, and therapy, but has always managed to keep a smile on her face and a twinkle in her eye. She is a miracle, and so is her journey.
This is sweet Taylor. Taylor has Rett Syndrome. She cannot walk, talk or use her hands purposefully but her mind is intact and she can understand everything. She is such a happy, loving, bright girl.
Taylor has many friends at school (and two boyfriends) and is well liked by all the staff. Although she cannot talk she says so much with her bright blue eyes. She can communicate using eye gaze and is learning how to use a new computer system that reads her eyes when she makes choices.
Elisa has grown to be a happy girl with a bubbly personality. As an infant, she was initially diagnosed with Cerebral Palsy as a means to explain her symptoms. From birth, she had alternating increases and decreases in her muscle tone. It was hard for her to keep her head up, while other muscles were tight. Her milestones of crawling and walking were delayed. She began speech and physical therapy and underwent surgery to lengthen her spastic leg muscles.
She uses a communication program on an iPad to express her thoughts and desires. She continues to expand her vocabulary as well as her text messaging savvy. It is our hope that she will catch up with her peers.
New genetic testing was made available and she was found to have a mutation in the protein coding gene.
Christian was diagnosed with Autism at 14 months. Christian likes Thomas the Train, playing in tunnels and tents, and exploring outside. He receives speech therapy, occupational therapy, physical therapy and ABA therapy through First Steps.
Communication and social interaction are challenging for Christian. Christian struggles to let people know what he wants and engage in back and forth play. Having the GoTalk 9+ would increase Christian’s independence and decrease Christian’s frustration across his day.
Henry made his way into the world 4 months prematurely. After 6.5 months in the NICU Henry was finally able to come home. He did not leave the NICU empty-handed. For the first couple of months, it was required that Henry is hooked up to an at home heart rate and oxygen monitor and he also had a feeding tube to help with feedings because eating wore him out quickly. He routinely follows up with a variety of doctors and specialists. He has physical and occupational therapy a couple of times a week and has made great strides.
Since leaving the hospital, his shunt has malfunctioned twice, requiring surgeries to fix the blockages. Because of the severity of his brain bleed and premature birth, Henry has several developmental delays. Even though all of his struggles, Henry is always a very happy baby. His laugh is contagious and he is always smiling.
Grace’s birth was normal with no complications and full-term. She reached all her early milestones from birth-4 months. Grace met the requirements for First Steps, and a therapist was assigned to her at one years old.
During the course of First Steps, Grace began to stop moving her left side. The test results from genetics came back and it was determined that Grace is diagnosed with a rare genetic mutation; she is the fourth in the nation, possibly the world, with this genetic mutation. She is the first female with the mutation. It is so rare, that there is no name and no research on the mutation. The mutation is prohibiting protein from being transferred to one part of her cells to another part that is vital for physical and cognitive development.
There is no cure, no medicine, no knowledge on what is happening to her. “Intense therapy” is the only recommendation that her doctors gave.
Jayce is an extremely lovable 15 year old who is full of joy and eager to please his teachers, parents, and other family members. He was diagnosed with Microcephaly as an infant which caused him to have global developmental delays. He has a seizure disorder controlled by medication, and was later diagnosed with Autism Spectrum Disorder.
We love the following quote that describes our feelings about our son, “I thought I would have to teach my son about the world, but instead it turns out I have to teach the world about my son. They see a boy who does not speak I see a miracle who does not need words.” Jayce is non – verbal, and uses a communication device to help make himself heard. He continues to teach us about faith, patience, compassion, and most importantly unconditional love.
Princess Luz is like any other child. She loves adventure, laughs, and has such an amazing imagination. We never expected the tragic event of getting hit by a vehicle and what happened to my princess. You read about it and even hear about things like this on the news, but when it’s your little one everything changes. Luzarale was on a breathing machine and was also being treated for sympathetic storming, common in patients with a brain injury.
We have come a long way together It was a tough and long road in the beginning but we know with the continued support of family, friends, and the ones that give continued support she will continue to progress.
Courtney is a teenager diagnosed with Acute Disseminated Encephalomyelitis (ADEM) in September 2014. She is Tracheostomy and ventilator-dependence, as well as gastrostomy tube dependence for most of her nutritional needs. Courtney is a creative, artistic, and fashionable teenager who is always looking forward to being able to be home with her family. She is wheelchair dependent and will require a wheelchair accessible home.
Cohen is our amazing, fun, silly, mischievous, determined, and snugly five years old. Cohen was diagnosed with Autism at the age of two. He has been receiving intensive therapy since before his diagnosis and has made so much progress.
His needs are now more complex and he gets very frustrated when he cannot communicate what he wants or needs. He has successfully used a picture exchange system to communicate since shortly after his diagnosis, but more and more frequently, the PECS book just does not give him a wide enough variety of choices to adequately express himself. We believe an iPad loaded with an augmentative communication app will be life changing for Cohen and our whole family.
Beautiful Erika was born with Pneumonia and multiple health concerns, and battled to restore her health at birth. All appeared well until she entered her preschool years. Erica’s struggles in school persisted. Her biggest concerns were her increasingly challenging behaviors, which seemed to align with ADHD. She was diagnosed with ADHD (and ultimately an Autism Spectrum Disorder) and ultimately qualified for special education services.
Erica has lost most of her cognitive abilities that seemed to flourish in her younger years. Our goal is to help Erica live her life to the fullest with each healthy day she is blessed with. One activity that we feel she could enjoy, alongside us and her brother, is cycling!
Marley is a 7 year old sweet girl who is diagnosed with Cerebral Palsy, Autism and Cortical Visula Impairment. Marley nearly lost her life shortly after birth; however, the healthcare team was able to resuscitate her and save her life. Her first couple years of life were not easy but Marley’s a fighter and never gives up.
Marley had significant delay in all developmental areas including motor & language. Marley still struggles with communication and social skills but is getting better every day.
Katy is 5 years old and has Down Syndrome but Down Syndrome does not in any way define who Katy is. Katy can do anything any other 5 year old can do (other than talk)! The love of Katy’s life is her brother, who is exactly one year older than she is and is the best therapist.
We hope that a communication device will help her make friends, be invited to birthday parties, and play dates for the first time! A device will therefore speed up her ability to motor plan her speech effectively. As parents we are thrilled that Katy is part of our family and believe she is changing lives! Katy smiles all day! She is special beyond words. She has so much to say and I can’t wait for her to start being able to tell us what’s going on in her head!
Addison was diagnosed with Charge Syndrome. She is 10 years old and loves life more than anything. She loves music, school, sports, playing with her friends, and being outside! She is also a fashion diva! She is unable to swallow any foods or drinks as she is at risk for aspiration and subsequent aspiration pneumonia.
Addison’s only form of communication is by sign language. Her Audiologist stated that she would more than likely benefit from having an Ipad in hopes to communicate with people who don’t know sign language. Her abillity to orally communicate is limited due to her trach, vocal cord paresis and hearing loss. We are excited to see what the future brings for her as she grows older!
Jacob was diagnosed at age 4 with Moderate Autism, ADHD, Moderate-Severe Expressive Language Disorder, Sensory Processing Disorder and excessive Anxiety in Alabama. He didn’t speak in words but babbled. He is a kind and considerate big brother and kisses his little sister every night before bed. His father, struggling with his own mental illness, moved to Missouri last year and then returned to Alabama this past year along with Jacobs medical insurance and child support.
Jacobs is a go-getter. He works diligently with his therapists in and out of school. He has improved in all areas quite significantly except for his Language Impairment. Jacob has overcome so many obstacles through pure perseverance thus far in his 9 years that an IPad will give him the tools he needs for future success.
Theo has a recent diagnosis of Autism Spectrum Disorder. He sees a private speech therapist twice a week and a First Steps Speech Therapist once a week. Theo is a handsome, loving child who loves puzzles, movement, and deep pressure. He has frustration with his difficulty communicating needs and this is why his speech therapists and I know the iPad will help him communicate with pictures and decrease his frustration level at home and at Kinder Care. Theo works daily on language, but he is currently non-verbal.
Hi my name is Dylan and I have Autism. This disorder has not stopped me from being an all-around boy, nor has it stripped me from my contagious smile. I love playing with my brothers, crashing into furniture, and enjoying mealtime with my family. An adaptive tryke will allow me to spend more outdoor time with my family by being able to go cruising on the nearby bike trail.
Jude has been a fighter all his life. Jude and his twin sister were born prematurely at 24 weeks. Jude had a brain bleed when he was 2 days old that causes him to neglect his left side of his body. By looking at him you wouldn’t know that he has been through two brain surgeries and nonstop therapies. Jude is the kindest, loving, and most driven kid we know. We are so proud of him. I really hope he is able to keep up with his big brother and sister racing their adaptive bikes in our driveway.
Benjamin “Jian Jian” is diagnosed with tethered cord, Myelomeningocele Spina Bifida, and club feet. He was in a group home for special needs orphans where he lived until he was adopted. Once home, we set up care with an Orthopedic Physician, Urologist, and Neurosurgeon. Jian Jian has had several surgeries.
Jian Jian continues to be ambulatory with the assistance of KAFO braces. He is a very active and loves to be outside, play basketball and ride his bike. Recently, he started a business building birdhouses. He sold them to friends, family, teachers, and even hosted booths at craft fairs. He was so proud of himself and sold out of his stock completely. He has also taught himself by watching YouTube videos how to create a Minecraft server and to rebuild a computer. He is the most tenacious and spirited child we’ve ever known. He is really the joy of our lives.
Sophia is one of the twins affected by the mutation in her SCN2A gene, which causes seizures, autism, delayed cognitive and fine motor skills and is nonverbal. However, her diagnosis does not define her. She is a very happy go lucky girl who is always on the move. She has a twin brother and little sister who adore her, keep an eye on her, and even have learned to do therapy with her just by seeing so many therapists working at home with her.
We wish Sophia can participate in the upcoming ‘Pedal the Cause’ fundraiser with her siblings who have been doing it for the past couple years.
The Arya Foundation has helped Sophia get an Ipad for her communication needs couple years back and we sincerely hope we can get an adaptive cycle.
Emily is a joyful child who loves to be around people, especially other children, and to be able to move and play. Everyone who meets her comments on her beautiful smile. Because of a Congenital Cytomegalovirus Infection (cCMV), Emily has many struggles, including that she is profoundly deaf and has Cerebral Palsy.
She is still unable to sit up, crawl or walk and has limited fine and gross motor skills she depends on adaptive equipment and adults to help her participate in her world. Emily has thoroughly enjoyed the couple of times she rode an adaptive bike at therapy, and we just know she would love to join her big sister on a bike ride in her neighborhood if she received an adaptive bike.
I would like to thank The Arya Foundation for all that you do for people with special needs. This is such a great program, and it is changing so many lives for the better. My son, Tanner has a diagnosis of Dyskinetic Cerebral Palsy, Global Development Delays, and Hypotonia. He uses his reverse walker most of the time, but he does use his wheelchair for long days or field trip type activities.
He is just a great kid that does things in his own way, in his own time and he works very hard to do them to the best of his ability. Thank you so much again for all that you do!!
Daniel is a sweet & fun loving 5-year old boy with Autism. Since he was diagnosed, he has gotten support from OT, PT, SLT, and ABA therapies. He has come a long way but still needs sensory inputs such as deep pressure to help him focus. Daniel loves Disney, Legos, Batman, reading, and swimming. He is a great brother to his sisters and excited to be entering kindergarten.
Marley is our “Rainbow” baby and is perfect. She was diagnosed with Right-Torticollis, which is a stiffening of the muscles on the right side of her neck that attributed to the lack of muscle development on her right side, and flatness of her head, called Plagiocephaly.
Our insurance believes that a Cranial helmet for Marley is not a medical necessity, but a cosmetic choice that we have chosen to do. The back of Marley’s head is in the 98-99th percentile, which means it is completely flat in the back. This has become just the first of many challenges to come for Marley, we are working to get our baby what she needs to live a long and healthy life. She has beat the odds and is our little miracle. We are truly blessed to have her.
Tishira is a very energetic young lady that is diagnosed with Smith Magenis Syndrome, Epilepsy, Intellectual Disabilities and Developmental delays. She has always had the desire to ride a bike but never had the ability to do so until now.
We were invited to Cycle St. Louis, where she was able to ride a bike for the very first time. This was an amazing experience that she will remember for years to come. She was fitted for a bike and helmet, perfect for her special needs. Now that we know what kind of bike Tishira needs, we have to find a way to purchase it. I was offered information about The Arya Foundation through St Louis Recreation Council.
Sammy is a beautiful gift of God. He is a happy and cute little boy. However, he was not able to express himself properly and had very low attention to people nearby. He was diagnosed at age 2 with autism with speech and cognition delay.
From that day, we were just like being hit by a big stone and having no direction for our family future. Having an abundance of help from social workers and therapists, we accepted it and started to understand how to support Sammy to express and to let him know this wonderful world. Thank you for such a wonderful program to help children in need like Sammy!
Jacob is an energetic and happy 9-year-old who was diagnosed with Microcephaly and Epilepsy when he was four months old. Jacob has had many hospitalizations due to seizures and even had to be in the NICU for a week because they couldn’t get his seizures to stop.
He is non-verbal and has just started to use an iPad to communicate at school. He has shown some success with the iPad, so we are hoping that this will help him to be able to communicate his wants and needs. Jacob receives Speech and Language therapy, Occupational therapy, ABA therapy, Music therapy, and he has his own para with him all day. He is in a functional classroom for the majority of his school day.
Holden was a healthy, happy addition to the family. All of his development goals were met or exceeded until he was about 18-22 months old. By the age of 30 months, development stopped and then began to regress. Holden saw a neurologist and was diagnosed with Autism Spectrum Disorder. His diagnoses have expanded to include Sensory Integration Disorder and ADHD (combined type) as well as digestive challenges and significant food allergies.
The Arya Foundation’s assistance is an amazing blessing to help us afford this expensive OT equipment. Thank you so much for your acceptance of our application. We are excited at the possibilities of accessing this equipment every day, all day.
Ashley had a prenatal diagnosis of Down Syndrome. Delays due to low muscle tone and developmental delays created barriers to her being able to effectively communicate with others as well as the constant turn over in Speech therapists for 2 years before preschool.
Now in high school, the plan to spend an ever-increasing amount of time in the community with her classmates prospects the need for a lightweight and more advanced speech device. She still seeks out others, verbal and non verbal, to pass time with. Some meetings are more effective than others but she still works hard to find her place in this world. Her family loves her and she returns those affections. She is our very own Super Girl!
This Is Sawyer. Her delivery was very rough. At 6 months she was diagnosed with Cerebral Palsy and Hip Dysplasia. Despite surgeries on her hips and eyes, and all the hardships she has faced, she is a very happy easy going little girl! She is always smiley.
She is currently getting physical therapy, occupational therapy, and speech therapy. Speech therapy is working on her oral feeds and talking. She is working on muscle control and use in the other therapies. Sawyer is the light of our lives and we wouldn’t be complete without her. She brightens everyone’s life she enters and everyone falls in loves with her instantly!
Aiden is a remarkable young man. He is eleven and has been through much in his young life. Aiden was born early (32 weeks). He is legally blind. Although Aiden is bed ridden he has a wonderful smile and attitude. He often smiles and laughs out loud. Aiden’s mother and father work hard to ensure he is happy and healthy.
Aiden has 10 siblings who loves him deeply, and he have 15 nieces and nephews who talks to him and make him laugh and smile. Aiden has a nurse who has been with him since he was 15 months old, and she is totally involved in his care and loves him as if he was her own. Aiden has much support from his family and others who come in contact with him.
Delano is full of life and enjoys spreading his love with friends and family. He is the middle of three children and takes pride of being the big brother to Demaun (his younger brother with Prader Willie Syndrome).
Delano has obstructive sleep apnea and is in need of an adjustable bed to sleep comfortably through the night. He is currently sleeping on his elbow to keep his head elevated.
Kenneth ‘Liam’ is an amazing young man. Even at a young age, he has faced several lifetimes of adversity, and yet he is the most loving and cheerful person ever. Liam was born with Spina Bifida, Chiari Malformation, and Hydrocephalus. He has weekly sessions of OT, PT and Speech Therapy.
It has been a hard road for Liam and yet he faces the challenges of life with joy, an optimism one seldom sees even in able-bodied, healthy people. Liam loves his toy trains and his computer tablet, but more than anything Liam loves people. Strangers are just friends he hasn’t met. He is very empathetic and rejoices and cries with the happiness and sadness of others. More than anything else, Liam longs to play with others. He has many playmates at school.
Winter was born prematurely due to Intrauterine Growth Restriction and Pre-eclampsia. After a heart-wrenching 111 days of NICU, Winter was diagnosed with Severe Chronic Lung Disease, Bronchopulmonary Dysplasia, Periventricular Leukomalacia, Ischemic Encephalopathy, and is G-Tube and Oxygen Dependent.
Winter has a massive behavioral issue due to an inability to communicate. Our biggest goal is that we can help her be happier by giving her a voice and working on her communication skills.
Franklin has a contagious smile and bright eyes and loves to socialize with everyone he meets. His favorite thing to do is the dance with his brother. Franklin had suffered a brain bleed in utero, which caused a buildup of fluid resulting in hydrocephalus. He had his first brain surgery to insert a reservoir to manage the fluid buildup. Since the time of his first surgery, in addition to Hydrocephalus, Franklin has been diagnosed with Hemiplegic Cerebral Palsy and Cortical Visual Impairment. He’s had two surgeries to help his vision, and when his hydrocephalus built up again this past year, he had another brain surgery, called Ventricular Fenestration, to assist with relieving the pressure on his brain again.
Franklin utilizes adaptive equipment, like a gait trainer, to help him get stronger, but an adaptive tricycle gives him more motivation and fun in building his leg muscles and playing with his brother. He received the opportunity to get fitted for an AmTrykes tricycle this year and is so excited to have a new opportunity to be mobile and experience the world.
Mikey was 2 years old when he was in a near drowning accident. He was a typical before but because of a brain injury from the accident, he has significant delays. He does not walk on his own. He uses a wheelchair most of the time but also a walker. He tries hard at everything he does. He’s smart and loves people. He always smiles and very friendly.
Brody has a rare genetic disorder called Kleefstra Syndrome. He receives physical therapy, occupational therapy, and speech therapy. Kleefstra affects his ability to communicate verbally and he has several developmental delays in speech, fine, and gross motor skills.
His little brother recently started riding his tricycle and Brody is so eager to learn how to ride a bike. It is very hard for him and a huge part of that is the bikes for his age and size that we have access to purchase are not suitable for him. The Amtryke tricycle will provide him the proper fit, comfortable seat to support his low muscle tone and straps for his feet to help him.
Jenna has been diagnosed with severe Quadriplegic Cerebral Palsy as a result of her extreme premature birth. While Jenna is unable to care for herself, she has been given a very sharp mind. She graduated last year from Middle School as a straight A student and was inducted into the National Junior Honor Society. Through the local Disabled Sports Association (DASA) she has participated in summer camps, wheelchair soccer, swimming and a few other activities.
Jenna loves to draw. From the time that she could hold a pencil she was always doodling. Her desire is to be an animator with Walt Disney. We too would love to see her attain this dream of making a living through her artwork.
Our son Daniel was diagnosed with Autism when he was 3 years old. He is a very active boy. He loves to run, play and move a lot. One day, he saw a child ride a bike and wanted to try it. So we bought a bike from a consignment shop. He tried but cannot ride an ordinary bike. At KEEN St. Louis, they have a special bike that he can ride. He was very happy biking at the KEEN activity.
Seeing his happiness, we looked into buying a bike like that. The bike would benefit him by giving him an activity that he likes to do and is fun. It will also give him an opportunity to ride a bike like other kids his age and make social connections with them too. It will really boost his confidence and sense of independence. We will forever be grateful for your kindness and generosity.
At 10 years, Mia had been sick with the flu and was getting worse. We rushed her to the emergency room and minutes later went into cardiac arrest. After 4 minutes they successfully got her heart beating again. Later she was diagnosed with Addison’s disease, a rare life-threatening disease. The cardiac arrest was very traumatic to her little body.
She had heart damage which resulted in heart failure. Brain swelling and spinal cord damage caused her to have paralysis of her lower limbs. She now has to depend on a wheelchair because she is unable to walk. Mia has always been the very active child and this grant of ‘BellavitaTub system’ will help to restore much of her freedom and mobility.
Christopher receives his nutrition by a g-tube via pump. He has a history of Multiple Formula Intolerance, Chronic Constipation, and poor weight gain.
Christopher recently been trialing a blended diet consisting of baby foods, yogurt, oil, etc. He is tolerating it well but not all of his nutrients needs are able to met with baby foods. Christopher need to blend a variety of table foods, including family foods in his eating.
The blender currently being used is not capable of processing table foods thin enough to go through the tube. The Blendtec Blender will allow Christopher to have a fully blended, nutritionally complete diet. This will provide an optimal nutrition for growth, development, and overall health.
Arie was born with Congenital CMV (Cytomegalovirus), which resulted in Spastic Quad CP. During the first 3 years of Arie’s life, we spent 50+ nights at the hospital treating multiple challenges and illnesses that were brought on by her compromised immune system resulting from CMV.
Arie absolutely loves the outdoors. She enjoys our family walks while Austin, her big brother, rides his bike along the Katy Trail or in the neighborhood. Arie consistently points to his bike, as though she is asking to have a turn. An adaptive bike for Arie would not only bring her freedom, but it would bring her the feeling of inclusion.
While Arie is coming to an age where she is constantly looking for independence, the financial challenges of an adapted bike for Arie seemed almost insurmountable. Without the assistance of The Arya Foundation, the cost of an adapted bike would have taken much longer to save up for.
Ryland entered this world screaming and kicking! When my husband and I saw him for the first time our hearts smiled. I was told that my baby was profoundly deaf in both of his ears.
It was determined that Ryland needed a feeding tube so that he could receive adequate nutrition. The feeding tube was placed and we were discharged. Although Ryland has very little control of his movements, he is happy and he tries his best to make strides. He can’t yet sit unassisted but I see him getting stronger and better by the day.
Ryland enjoys watching his sisters and friends ride their bikes and I am happy that we are able to get Ryland a bike of his own soon so that he can join in on the fun!
Nolan has Iractable Epilepsy and currently his seizures have been controlled with the Ketogenic diet for over 600+ days. We are so proud of how well he follows the diet. It’s so hard telling him ‘no’ to candy, pizza, juice boxes, cakes, etc (things typical kids get to enjoy). He currently has delays in SLP, OT and PT. He need help foster his communications and fine motor skills.
Jackson is our sweet 8 year old son whom you will always find happy & smiling! He endures more than most and rarely complains. Shortly after Jackson was born, he began having seizures and we have struggled to control them since. In addition to Epilepsy, Jackson is diagnosed with Cerebral Palsy, Dystonia, Cortical Visual Impairment and Developmental Disability.
Since May, Jackson has been admitted to the hospital 13 times for increased seizures and pneumonia. Due to all this he has been placed in home schooling. For this reason we are happy to get Jackson an Ipad. His teacher and OT both bring theirs when they come to do his home schooling and it has become a great tool for him! We are happy for him to have his own that we can work with on a daily basis to aid in him being able to communicate with us.
When Salem was 18 months of age, our world came crashing down; when our healthy, handsome young boy stopped talking, couldn’t auditory process any language, had an ataxic gate, and was flipping toys over. He was hospitalized for a week due to high CK levels in his blood and for his regression.
The week consisted with multiple tests, some of them very evasive and painful. We received an initial diagnosis of regressive Autism but had to wait 2 months to get a result on his muscle biopsy. The final result showing Becker’s Muscular Dystrophy as well. He had also received Speech, Occupational, Physical therapy. Salem learned sign Language, repeated one word phrase, then two words, then 3 words and now 4-5 word sentences,
Maxwell (Max) is a wonderful and fun loving 6 years old who has Cerebral Palsy. In Max’s short span of life he has learned to conquer many things that we take for granted such as chewing food, sitting up on his own, walking, and even putting a puzzle piece into a simple puzzle. Max’s team decided Max would greatly benefit from an AAC device. Max shows an amazing zeal for life and takes on his challenges head on, due to this he will continue to overcome the obstacles that life has been put before.
Liam has Down Syndrome and developmental delays associated with language/speech delays. Liam Jack has spent many hours over the last three years working hard with his speech, physical, and occupational therapists through First Steps. We are constantly amazed by the strides he makes and what he can do. Liam loves to be read to and will hop in your lap and hand you a book and sign and say “book” so proudly to get you to read.
Mikayla was diagnosed with Epilepsy and development delay around the age of 2 months old. Since then, we have been trying to treat her seizures, which have not been under control. Mikayla is currently still having seizures and takes several medications to try to prevent them.
She is very fragile in that she has broken 2 bones in the past 2 years with no reason known. She currently cannot sit, stand alone, walk, or purposely hold items for a long time. Mikayla is getting heavy to hold and lift. We are in need of a lift system in our home to move her to her chair and a bathroom lift to bath her.
Evelyn likes to be busy and try new things. She loves to learn and questions life around her. Her hobbies include cooking, swimming, singing, bowling, reading, hanging out with friends, playing games, and hiking. Evelyn is a freshman at high school. She is embracing new learning opportunities, new friends and new teenage experiences. She hates to be left out of an experience and having an adaptive bike that enables her to keep up with friends and family will boost her mentally and physically.
Samantha is a 2-year-old girl diagnosed with 22Q deletion. She has a great smile and a feisty personality. She loves her family, listening to music, watching television, staying up late and bossing people around. Samantha is non-verbal but communicates her wants and needs effectively. She knows what she wants and is not afraid to make it known.
Samantha receives nutrition services as well as occupational, physical, speech and vision therapies through First Steps. Samantha has motor and feeding difficulties. She is safe to eat pureed foods by mouth, but her family has difficulty getting a wide variety of healthy foods to the right consistency. Funding for a special blender gave her family the ability to expand her food repertoire and keep her healthy and strong.
Zachary was born with a genetic skin disorder called Recessive Dystrophic Epidermolysis Bullosa. When Zach was born, he was missing skin from his left foot, left shin and left knee. As time has gone on, Zach has thrived. He still endures 3 hours per day wound care. It hasn’t gotten easier, but he knows that he must do them to stay healthy and infection free. The scar tissue thru the years has caused Zach to lose his ability to walk, and he also has “mitten” like hands.
We are so incredibly proud of him. He is a freshman in high school. He is on his school Special Olympics team. He is very proud to show everyone the medals he has earned. This has been so good for him, and as he grows older, his support system also grows. Zach has adopted younger brothers that think the world of him. We enjoy the good times together, and we make it thru all the harder times. Thank you for accepting the application for a vehicle modification.
Jayden has a diagnosis of Autism Spectrum Disorder and ADHD. Jayden is what we have always called our unexpected blessing. He did not start speaking until after he was 3 years old. He has never been able to stay still since before he started walking.
We have been blessed with some Occupation Therapy for him and they have taught us that he has Sensory Processing Disorder. It has been suggested that an SPIO shirt could benefit Jayden with this. It would be such a huge blessing to our family to receive this shirt for Jayden. All we want for Jayden is for him to be able to be successful and hopefully one day be able to live an independent life.
Lenzelle stated off as a typically developing baby boy: happy, affectionate, and funny. I first noticed something when he was 23 months old, he started losing coordination in his left arm so we started therapy. Lenzelle became sick with the flu following a MRI and spinal tap procedure.
Lenzelle started regressing after getting over the flu. He started falling a lot when walking and his speech started declining to where he can’t walk or talk now. Lenzelle has been participating in speech, occupational and physical therapies to progress. Lenzelle still cant walk or talks but he’s sitting up by himself again and working hard at being more independent.
Caitlyn has Rett Syndrome, Autism, Cerebral Palsy, Epilepsy, and Cortical Visual Impairment. Caitlyn receives language therapy, occupational therapy, physical therapy and vision therapy each week. Her current Individual Education Plan (IEP) documents these services in detail and the goals she is working on in class as well as within each therapy.
Caitlyn uses many different types of adaptive equipment throughout her school day. She comes to school in a special “stroller” that can be tied down in the school bus during transportation to and from school.
Caitlyn loves music, sensory items, and positive reinforcement by others while biking outside. She is an easygoing, very sweet little lady that listens to Ruth B, Adele, Guns & Roses, Justin Timberlake, and the frozen soundtrack.
Chloe has had multiple health issues since birth. She was diagnosed with Jeune’s syndrome shortly after her birth and was recently diagnosed with Mainzer-Saldino Disorder. She had a kidney transplant. She loves to ride her bike and play but easily get fatigued. She has outgrown her plastic bike. A special needs bike would help her to be more independent and get the exercise she needs with assistance as needed.
Ming was diagnosed with Autism when he was 3. He has trouble in coordination between his hands and legs which makes it hard to handle a regular bike. This failure limits Ming’s outside activates and he is still interested in riding a bike because he keeps watching and looks so excited when he see other kids ride a bike. We believe this modified bike will make him happy and establish confidence in him as well. The Worksman Personal Activity Vehicles PAV3 will be very easy for him to handle and I believe it will favor him to have a better balance for his body and then he will have more outside entertainments.
My name is Annabella. You can call me Bella! I was born with Pfeiffer Syndrome Type II with multiple congenitals. So far I have had 40 surgeries if not more. Not only that, i am also diagnosed with Arnold Chiari Malformation, Congenital Hydrocephalus, Craniosynostosis, Mid-face Hypoplasia, Spina Bifida unspecified, malformed Kidney, etc.
Because of my complex condition i am a non-verbal baby and has speech delay. My ENT doctor said my voice box is damage and too swollen because i was intubated pretty often in the past. Right now we are happy we can get some help from The Arya Foundation to get the Ipad for communicating.
Peyton was born on April 25, the best day of my life. As far as developing goes I noticed early on that Peyton didn’t meet his milestones. By 3 months we had a diagnosis of a delay. Peyton was then able to get a diagnosis of Cerebral Palsy.
Although Peyton has significant delays across every area, he is incredibly happy. He loves to give hugs and smile directly into your eyes every chance he gets. He is quite the ladies man. Not only that, but he is a fighter. He has been going to therapy since he was 3 months old and puts in hard work every time. We have grown and progressed so much, every little thing counts. Peyton is very dear to many and has taught so many life lessons.
Anthony was born at 27 weeks at St. Louis Children’s Hospital weighing only 1 pound and 14 ounces and remained there for 4 months in the NICU. Due to Anthony’s premature birth, he’s experienced several developmental delays and is currently receiving Speech Therapy, Physical Therapy, Occupational Therapy and potentially ABA Therapy. Anthony has been diagnosed with Autism. Despite his medical conditions and diagnosis, Anthony continues to be a happy, loving child and a total joy to be around.
Lily was born premature at 30 weeks. She spent 3 ½ months in the NICU. Lily had her first surgery just over a month after she was born to repair Duodenal Atresia. She had to have three more surgeries to repair hernias and GI issues. Lily is also working on fine motor and speech skills with OT, PT, and Speech therapy.
Lily Belle is hilarious! She has the most infectious laugh and smile. She goes a million miles a minute. She loves music; She can feel it and you can tell by her excellent dance moves. She gives the best hugs and is so creative. She wants ice cream all day long and never seen anyone be so excited when eating it. She is compassionate and loving. Lily can tell if someone is upset and will be the first to comfort them.
She is way too social! Everywhere we go she has to say “Hello” to everyone and wave and those blank stares or phone minded people stop, look-up, smile and wave. She loves with all her heart and ours is full because of her.
Myelin has an award winning smile, awesome laughter and loves to be hugged for he has diagnosed with Autism. For Myelin to become more functional and be able to communicate, he will require many hours and years of extensive one on one therapy with speech, eating, occupational therapy, music therapy, behavior therapy, etc. My family believe that Myelin can lead a functional and productive life in society. He is a sweet, loving boy who will make a great difference. Myelin sees the world not in the same way the world see him.
Mason is our 5-year-old “SWAN” – he has a syndrome without a name. He was born with multiple congenital anomalies – birth defects in almost every system of his body. Extensive genetic testing has yet to reveal a definitive answer as to why he is unable to crawl, stand, talk, walk or do much for himself yet. But one thing we know – none of it has stopped him from loving life! He has a smile a mile wide and he brightens the lives of all who know him.
He enjoys his therapists too and is learning to give a “high five” to say hello! We are hoping to find a seating solution level to the floor that would allow him to play with toys and participate in activities while supported in a way that is comfortable and relieves his stress caused by lack of support. Thank you for such a wonderful program to help children like Mason!
Saed has sensory processing difficulties. The classroom team developed a “Sensory Diet” consisting of movement and deep pressure activities as well as the use of sensory supports such as pressure vest. This “Sensory Diet” seems to help calm Saed and also helps him work with his teacher. Saed also has difficulty sleeping at nights, taking a long time to go to sleep and waking frequently throughout the night. A weighted blanket will calm him down and help him sleep at night.
My husband and I waited over two years to adopt a baby. Maria was born on November 2, 2010. We were at the hospital when she was born and were able to hold her, even before her first bath. Around two and a half she began walking on her own. It was a miracle. To this day we don’t take one step for granted.
At this time, Maria’s biggest challenge is speech. She has been diagnosed with Childhood Apraxia of Speech and Dysarthria, making it very difficult for her to learn to talk. We would love to have an iPad with this app at home so she could continue to learn to use it for communication. Maria has good eye-hand coordination is able to select the buttons with accuracy. Maria brings joy to everyone she meets through her incredible smile, laugh and loving personality. Thank you for giving us the opportunity to share Maria’s story.
Our son, Ethan, was diagnosed with autism at age 2 ½. He has dealt with severe insomnia and outbursts of anger and frustration most of his life. Both of Ethan’s parents changed their jobs in order to assist him more.
He is currently working with behavioral therapists and is making progress. The therapists stated that he would likely benefit from having an IPad. Ethan loves music and letters and excels in that area. We hope to build upon that by adding technology to his treatment plan. He also loves diesel trains and has an intense desire to learn more about them as well.