David was diagnosed with autism and focal epilepsy. He turned two without being able to use any words and having no understanding of words that were spoken to him. However, in the last year he has made great strides in the understanding of language. His expressive language has come a long way too, but he still struggles with communication itself.
He has started using the Proloquo2go app with his speech therapist during sessions and has become excited about using it and being able to communicate his wants and needs. He especially appreciates it because he recognizes how frustrated he gets when others cannot understand him. Having access to an app all the time would mean less frustration for David and more time for him to play, learn and connect with the people around him.
That’s exactly what Variety KC wants for David, and for all kids! The ability to communicate is a great step toward inclusion! Won’t you help us make sure all kids have the tools they need to communicate with others? Donate today at www.varietykc.org/donate. Thank you!
Recently we received a letter from Seynab Mohamed, the mother of Nasiib Mohamed an adorable toddler born with a genetic disorder called WWOX. It is a very rare disease and there is no medical intervention or cure for WWOX related syndromes. Medications are given to relieve the symptoms of the disease. These symptoms are seizures ,developmental delay, low muscle tone, visual impairment, metabolic problems, lack of coordination, and many more.
Nasiib was born in Sweden, Stockholm and moved to the USA last year. His journey began when he was 5 weeks old, and they were in the hospital with his big sister who was sick from the same genetic disorder. Nasiib had his first seizure on a Monday morning when the family was watching doctors and nurses treat his sister from a long episode of seizure. It was a difficult moment for the family. After a few hours the doctors had the awful talk with my husband and I about our daughter having only a few hours or days left to live. Meanwhile, they started testing Nasiib and giving him medications for the seizures. They had two children in two different rooms next to each other. It was the hardest week of our life.. We lost our daughter that week. Luckily, my husband came in time to spend a few hours with her before she left us.
“Our story with a genetic disorder is a tough story, but it felt like I should just start from the beginning on how hard saying goodbye to our angel was for us. . She gave us two beautiful years and Nasiib had a few weeks with his sister, and we are grateful for that. Now back to Nasiib, he has the best team with him since we all had been through this before. We knew what medication to give him and all the steps to take to give him a better chance to fight his symptoms.
After a few months we moved to the USA and started our journey here as a family. One thing we hate about this genetic disorder is that there are not many doctors that have heard about it before, so we will always get the same questions over and over again. As his parents we have to work hard for him to get the best care he needs and get a good team to work with us, So we can give him the best care in life.”
Reading this family’s journey is so raw. It’s hard to understand the challenges they face. And still, they are determined to persist in finding the best care for their son. Part of that care includes the equipment and tools he needs to live his best life. Right now, a communication device and apps that can be used with his wheelchair would do so much to help determine his wants and needs. Variety KC understands how critical these types of resources are and our generous partners will make sure Nasiib gets the device he needs. Please help Variety to help other children like Nasiib – it’s so easy, simply donate at www.varietykc.org/donate Thank you!
Chase had a rough start in life with years of multiple hospitalizations, nationwide doctor visits and an unknown diagnosis. Finally, we received answers from a genetic diagnosis that put the pieces together. He was diagnosed with Cardiofaciocutaneous syndrome is a disorder that affects many parts of the body, particularly the heart (cardio-), facial features (facio-), and the skin and hair (cutaneous). People with this condition also have delayed development and intellectual disability.
But that doesn’t define Chase! He is an active 5th grade boy! He loves boy scouts, sports, and piano. He still is seen by several specialists and continues to have physical therapy, prosthetics and speech therapy. His beloved iPad was full of helpful apps and learning tools, but after 8 years it quit working. An iPad would be a valuable tool for Chase as he continues to work on his speech skills and continues to tackle his learning challenges.
Just look at that smile! So many Variety KC Kids like Chase would benefit from and iPad and apps to help with communication and learning. Don’t all kids deserve their best chance to learn? Donate today at www.varietykc.org/donate Thank you!
Kaden for President! That’s right, he aims high. And why not, he has already accomplished so much in his short life. Kaden’s diagnosis is Spinal Muscular Atrophy type 1. This presents some communication barriers, but you would be amazed by how well he makes himself understood by simply blinking “yes” or “no.” The problem is, it’s hard to be president and improve the lives of all future generations by just blinking his eyes. Most people don’t understand his form of communication so he needs a way to be heard.
Kaden loves to advocate for those with all abilities and today, Variety KC is advocating for Kaden. Currently with the use of his iPad and his mom assisting with his arm – Kaden can type out his thoughts and ideas. But, this isn’t true independence. His wish is to be like his peers and independently communicate (sorry mom). He’ll be able to do that with a Microsoft Surface Pro and PCEye Bracket. Using his eyes, Kaden will be able to type by himself and be easily understood. (And he has plenty to say!)
There is no stopping this young man, except the expense of these resources. Help Kaden be heard – and then let’s just see where he goes! Donate now at www.varietykc.org/donate Thank you!
We recently received this note from some Variety KC parents, “Brigham is 4-years-old and all boy. He has strengths and struggles just like most children. He could ride a bike and learned to swim at age two. He has impressive problem-solving skills and likes to get into mischief. However, Brigham has his struggles too. He was diagnosed with Apraxia and while he is working toward approximating words, he still is difficult to understand and cannot form whole words or sentences. This causes frustration, stress, and anxiety for all of us. With an AAC device, so many doors would open for Brigham. By giving him a voice we would finally be able to see and hear what he is thinking and feeling. It would not only change Brigham’s life, but our entire family’s.”
Many of our Variety KC Kids have an Apraxia diagnosis. It is a “neurological disorder characterized by the inability to perform learned (familiar) movements on command, even though the command is understood and there is a willingness to perform the movement. Both the desire and the capacity to move are present but the person simply cannot execute the act.” For example, a student may be taking a spelling test. They know the word, even know the spelling of the word – they just can’t get that word written on their paper at that moment. It’s frustrating, hard on self-esteem, and frequently leads to misunderstandings.
Variety KC Supporters understand the need for devices to assist our kids with Apraxia and they’ve made it possible for Brigham to have the tools he needs. Please help us to help other kids like Brigham, your donation can give them a voice. www.varietykc.org/donate
Franklin’s mom shares the first three years of her sweet son’s life:
“My kind affectionate son had an interesting first two years of life. Just a few months old, he was diagnosed with Cutaneous Mastocytosis a rare skin disease with clusters of allergy cells on the surface of his skin. He has approximately 20 clusters. Around 6 months of age we began to introduce foods starting with baby cereal, and he threw up until it was blood. He was then diagnosed with FPIES and had to be on a grain free diet. By 16 months he was receiving MO First Steps speech therapy, occupational therapy, and feeding therapy. At 26 months old, MO First Steps began providing ABA therapy. Franklin finally began to make progress in therapy and our incredible ABA provider recommended Ability KC for an ACC device fitting. My son understands direction and attempts to communicate through nonverbal cues, screeching, minimal sign language, and has less then 10 unprompted words. A communication device with the program touch chat would be giving a voice to my son. This would empower him to ask for what he wants, to consent to activities, to tell us what hurts when he is in pain, and to simply tell us what’s on his mind. In November, my son turns three and will start special education preschool and a device now would assist in his learning at school.”
It’s hard to imagine all that Franklin’s family has gone through in just three years, and what incredible gains! Variety KC donors know just how important the proper tools are in helping kids to keep moving forward and Franklin is getting his device and apps. There are so many young kids who would benefit from their own communication device, you can help Variety KC give them a voice – donate today at varietykc.org/donate. Thank you!