#MILESTONEMONDAYS
Each Monday join us to celebrate #MilestoneMondays
We will highlight an individual living with OCNDS and celebrate a milestone that they have achieved. Those living with OCNDS have many daily challenges. Some challenges are as basic as swallowing, toileting, dressing themselves, putting on a seatbelt, and making friends. Individuals with OCNDS have to work harder than the average person to reach the smallest of milestones.
If you would like to share your child’s #milestonemonday, please use this form.
Today we celebrate Mia!
Her parents shared: "Mia is outgoing and confident and is very happy to be a spokesperson for Special Olympics. Recently, Mia received her Special Olympic Athlete Leader Award. She spent the last year with an amazing group of people completing an athlete leadership course. Most of this year we have been in Covid lockdowns so they have had a lot of zoom meetings to complete the coursework and not too many face-to-face opportunities. Today was the culmination and celebration, enjoyed at the Police Academy who so wonderfully support Special Olympics. Mia’s sport is swimming, unfortunately, she has not been able to compete this year due to Covid. So we are very much looking forward to some great swimming next year. As an athlete leader with Special Olympics Mia has the opportunity to promote Special Olympics and has done interviews and been in videos. She is a great ambassador!"
Way to go, Mia!
Today we cheer for Maci! Her mother shared: "Maci’s sassy and energetic personality always brings a smile to our face. Maci was diagnosed with OCNDS at 3 years old. She has always struggled with communicating. It wasn’t until this past summer that we started to understand words and hear Maci communicate more. She has worked so hard at learning animals and has finally started echoing after us. We love hearing her sweet voice." Way to go, Maci!
Today we celebrate Helio! His parents recently shared this milestone of Helio skiing. "So proud to be skiing with our little Helio...with his willpower and enthusiasm, there's no mountain too high! Grateful for this family moment!"
Way to go, Helio! Thanks to Helio, this is our foundation motto for 2022 - "there is no mountain too high!"
Today we celebrate Harper! Her parents shared: "Words can not express how proud we are of Harper! From being delayed in every milestone, to wearing orthotic braces for years, to finally being able to ski on her own, we celebrate with her and thank God for her strength and determination."
Way to go, #snowbunny Harper! (we love how she is signing "more" at the end of the run)
Today we celebrate Samuel! He is 5, has OCNDS and needs assistance eating because he is almost fully blind; however, his mother just shared this milestone with us: "He is not independent yet. I still need to feed him. When he feels like it, he commits to learning. Seeing my sightless child succeed in doing what we take for granted was overwhelming, a great sense of achievement, a moment of pure joy. I felt so proud of him. Our future looks brighter, considering what he has achieved. Everything is less scary. You become stronger, more aware, and you think "yes, we will make it"." Bravo, Samuel!
Way to go, Samuel!
Today we cheer for Coleman! His parents shared: "Meet Coleman. Coleman was diagnosed with OCNDS at 19 months old. We first started questioning his delays at one month old. We noticed all of his motor skills were delayed, he threw up/spit up all the time without seeming upset, and he rarely made noises or cried. He took his first wobbly steps around 20 months and has been working so hard on his walking skills ever since. He has been wearing SMO orthotics with shoes almost everyday since he was about 17 months. He is 22 months now and we are so proud of his tenacity, how far he has come, and love that he is so proud of himself. Here is a video of him recently walking between our house and our neighbor’s. We love you, Coleman!"
Way to go, Coleman!
Today we cheer for Harper! Her mom shared: "One night we decided to have a family dance party, and we played music, and gave Harper a karaoke microphone. Harper is nonverbal and she was “singing” and dancing. Her confidence and love for singing was heart melting, even though she never sang a word. We were in awe, and are so incredibly proud of her!"
Way to go, Harper!
Today we cheer for Rowan! His parents shared: “At age 1, we wondered if he would ever crawl. We supported him with physical therapy. At 2, we saw him take his first steps. As a toddler and preschooler we saw him struggle to use playgrounds like other kids, and wondered if he would ever climb. We supported him with occupational and play therapy. We saw him learn to jump and run, always cautiously but bravely pushing on, even when the horseplay and fast movements of other kids made him anxious or threw him off balance. The OCNDS diagnosis at age 6 gave us the reason. Today at age 9, we saw him cross a mile high swinging bridge without a second thought…and saw a boy who’s already climbed so many mountains that this was just another for him to conquer, no different than any other. We are so proud of Rowan!”
Way to go, Rowan!
Today we cheer for Matilda! Matilda told a joke and laughed during a dinner conversation. Her family shared: "Matilda was diagnosed with OCNDS at the age of 13 after years of us searching for answers to what was causing her developmental delays and accompanying anxiety. She has always had trouble understanding social cues and humor and would often get angry at us if we were talking too fast or joking around at dinner because she didn't understand the joke, felt left out, and sometimes assumed we were laughing at her. It was such a joy to be able to laugh with her!"
Way to go, Matilda!
Today we cheer for Robin! His mom shared: "Robin is a silly, determined, tenacious and clever boy who brings us so much joy every single day. Everyone who meets him falls in love because he’s truly special. Robin was diagnosed with OCNDS when he was 22 months old. We knew something was wrong when he made very little progress in his gross motor skills in his first year of life. He didn’t start sitting until he was 13 months, crawling at 15 months and walking at 2 years old. It still breaks my heart watching him struggle to do things because of his hypotonia. Robin has started riding his balance bike! He has worked so hard to gather the courage to do this, which is no small accomplishment when you have hypotonia. For a long time he wouldn’t even touch the bike because he was too scared. Now he asks to go on his ‘big boy bike’. We are so proud of you Robin!"
Way to go, Robin!
Today we cheer for Brielle! Her mom recently shared: "Brielle is 17 and has a beautifully bubbly personality and great sense of humor. She has learned to adapt to many OCNDS challenges, especially in the kitchen because her tremors make it hard for her to cut, pour and estimate. She is a superstar as she always wants to give things a go. Here she made some Rocky Road."
Way to go, Brielle!
Today we celebrate Kirsty!
Her parents shared: "Kirsty is terrified of animals. She has a phobia of dogs and will panic at the park if she sees one nearby and doesn’t like to walk past them in the street. So when she was invited to her friend’s Pony Party we didn’t expect her to join in or go anywhere near the animals. It was a struggle to get her to engage with the pony but with the support of her friends she gradually approached one and eventually agreed to brush the mane and then even stroke it. It was a massive achievement for Kirsty to agree to sit on the pony, which she did at the end of the party with dad holding her hand. She was afraid but managed to overcome her fear to enable her to join in with the other kids and do the same things as everyone else. We are very proud of her."
Way to go, Kirsty!
Today we cheer for Matilda! Matilda is a sweet, social girl who loves dressing up in fancy clothes and high-heeled shoes. She loves fashion, dolls, and animals. She loves keeping up with all the news in her family and making sure everyone is doing ok. She loves going to school and helping her teachers. Matilda was diagnosed with OCNDS at the age of 13 after years of us searching for answers to what was causing her developmental delays and accompanying anxiety. She has a lot of anxiety over performing self-care tasks independently and tends to use them as an opportunity to demand parental attention and involvement in a very busy house. We have been working hard to create connection time, separate from self-care, as well as strategies for her to perform tasks such as breaking things down and practicing getting wet to alleviate her tactile defensiveness. With a final push, a giant meltdown, and a firm limit, she was able to wash her hair by herself with only verbal support from mom. She was so proud of herself and can now shower completely independently.
Way to go, Matilda!
Today we celebrate Jules! Jules is 12-years-old and a budding chef. Her parents describe her as spicy, clever, naughty, determined, and full of life. She has OCNDS and is nonverbal. Jules loves to cook and her school program embeds all facets of cooking into her curriculum to foster independence. On Mondays, she goes grocery shopping for her ingredients. Jules parents' shared: "She amazes us every day! Her 2 favorite dishes to prepare from scratch on her own are ceviche and jambalaya. They are beyond delicious. We don't prepare meals for her anymore because she makes and cooks everything she wants. It is incredible considering how hard so many other things are for her."
Way to go, Jules!
Today we celebrate Elyis! Elyis is a very happy 17-month-old! His mom shared: "He spends his days trying to keep up with his two older brothers! At 6-months-old he started weekly PT because he couldn't even hold his head up yet. Now he is trying to free stand!"
Way to go, Elyis!
Today we celebrate Carson. He is 7 years old with a heart of gold. His mom shared: "He is very active and loves to be outside! He also loves to help do just about anything! Carson used to have multiple seizures a day, and he has been seizure-free for 11 months now!"
Way to go, Carson! This is incredible news!!!
Today we celebrate Pedro! Pedro is a very active, happy, and loving boy. He loves going for a drive and going to therapy. His challenges are cognitive delay, speech delay, and hypotonia. Due to OCNDS, therapies fill his days including speech therapy, motor therapy, hippotherapy, and sensory integration. All of which have helped him understand how his body works and face daily challenges. His mom shared that, "Pedro is making progress with the PediaSuit Intensive Protocol, a type of muscle and occupational therapy. With this protocol, he has been making gains in walking, sitting, moving, in addition to working all the sensory and cognitive aspects."
Way to go, Pedro!
Today we celebrate Eden! He is 5 years old. His parents describe him as "a happy boy and stuntman who makes us proud and brings us his zest for life every day." Eden has OCNDS. It impacts his daily life as he has epilepsy and developmental delay. This summer, Eden learned to ride a bike. His parents shared, "He worked to do it. His determination and attitude to never give up gives us hope for the future."
Way to go, Eden!
Today, we celebrate Kirsty! She is a loving and sweet 9 year old girl who is eager to please. Her parents recently shared a milestone: "Kirsty has always struggled with toileting issues. She suffers with constipation which seems to be a common problem for children with OCNDS, possibly due to a combination of low muscle tone, sensory processing disorder and behavioural issues. During the time spent at home during Lockdown Kirsty has finally managed to use the toilet for number twos. She has always preferred to use a pull up and still needs to be encouraged to sit on the toilet instead, but we seem to have turned a corner with the problem this year, with the help of a reward chart."
Way to go, Kirsty!
Today, we celebrate Brady! Brady's mom recently shared us: "Brady has had many challenges throughout the years, but he has not let them stop him from doing what he loves and wants. Brady is a typical boy and loves anything sports related. He is a diehard hockey, football and NASCAR fan, and attends all home games of our local hockey team.
Not only a sports fan, Brady is also an athlete with his school district’s Unified Basketball and Bowling teams, as well as a participant with NY State Special Olympics and our local Challenger Baseball League. He has been able to forge many lasting friendships through playing on these teams and has learned what being part of a team is all about.
Brady attends a Life Skills educational program at our local BOCES and is doing very well. He goes out to real work settings to gain the skills he will need upon graduation. He will remain in school until he reaches the age of 21.
This young man is full of life and doesn’t let anything stop him. I’ve never looked at him as being a disabled child, but rather a differently abled one. He has shown me what a true fighter is, as well as giving unconditional love. I have learned much more than what I have given from this blessed young man. He truly has the heart of an angel and is my inspiration. "
Way to go, Brady!
Today, we cheer for Claire!
Claire is sweet, happy, fun-loving, clever, and imaginative. Claire was diagnosed with OCNDS at 10 years old. Claire's mom recently shared: Math used to be her most challenging subject, but now it is her best! Claire's math skills took a big leap this (2020-21) school year. During the April parent-teacher meeting, Claire was described as having a "math brain." Once a major challenge, Claire is now able to add and subtract double-digits. She's learning multiplication by grouping and rhyming off times tables. She knows the value of the different bills and coins and is able to make change. At school, Claire "gets down to business" and works hard - and it shows! We are so proud of her! Her achievements this year demonstrate what can be accomplishment with the help of supportive educators, encouragement, patience, and hard work."
Way to go, Claire!
Today, we cheer for Adriel! Adriel is an adorable, loving, observant boy. He loves to dance, watch soccer, and spend time with his siblings. He is 10 years old, however, he is the size of a 5 year old and requires a G-tube* for food. Adriel has OCNDS. His mother sent us an exciting update - Adriel is trying to take food by mouth such as bean broth. She says "it is extremely difficult for him but he is trying very hard." If he can continue to take food by mouth successfully, he will be able to have his G-tube removed. Way to go, Adriel!
*For those unfamiliar with a G-tube: a G-tube, is a surgically placed device used to give direct access to your child's stomach for supplemental feeding, hydration or medication.
Today, we cheer for CODY! A few days ago was Cody's graduation ceremony. His mom shared: "He has done 1000+ hours of speech therapy, physical therapy, music therapy, occupational therapy, horse therapy, and developmental therapy to get to this day. Drs said he would not walk- started walking after age three. Dr said he would not talk - started speaking at age 9. He rides his adult trike and last year and this year will be working at the grocery store bagging groceries for his summer job. I’m so proud of his determination and positive attitude (everyday he says he is awesome). He starts the next chapter of work skills this fall and I will update you then. As Dr Seuss says, "Don’t cry because it is over, smile because it happened."
Way to go, Cody.
Today, we cheer for Abigaile! Abigaile is a very loving, caring person who loves to play with children and her cat, and she has OCNDS. Her mom recently shared: "Abigaile is a strong girl who has come so far. She struggled with her math until she join Darts Ontario; she has placed 3rd for all of Canada. Her family couldn't be more proud of her and can't wait to see what the future holds."
Way go to, Abigaile!
Today, we cheer for Morgan! Morgan is getting ready to graduate from high school with a diploma!! Morgan's family shared: "After spending his whole school career struggling with academics, he fought hard, and has earned on his own, the diploma, as we were originally told he could only receive a certificate of completion. Morgan was only diagnosed with OCNDS last summer at the age of 17. We have been searching for answers since we first noticed delays in walking around a year old. As a twin, we were able to notice the differences early in life. Initially diagnosed with ADD and eventually a form of epilepsy, Morgan has diligently taken his seizure meds and has been seizure free since 14 years old. Morgan is a shy, loving person who is very active with soccer and his animals!"
Way to go, Morgan!
Today, we cheer for Elle! Elle is a sweet and energetic little girl who loves being a big sister and going on adventures with her family. Elle has OCNDS and her parents were worried about her transition to remote-learning: "Transitions are difficult for our Elle. Elle’s start to kindergarten may have started on a less traditional route but she is making the most of remote-learning! We are so impressed with her ability to adapt to remote-learning and make the best of a tough situation."
Way to go, Elle.
Today, we cheer for Mia!
Mia is 23 years old and is happy, sociable and friendly. "She loves to organize social outings with her friends to go shopping, to the movies or to concerts. She has OCNDS but she is incredibly tenacious and persistent and she does not place limitations on herself. She competed in 7 swimming races for the recent competition and surprised herself with her backstroke. She had not realized she could swim backstroke so well!"
Way to go, Mia!
Today, we cheer for Matilda! Matilda is caring, helpful, intuitive and full of ideas. She is 14 and loves connecting with others and chatting. She loves singing and dancing. Her mom recently shared a victory in the kitchen! "Matilda has always had trouble with hand dexterity and fine motor control due to OCNDS. I'm always excited when she wants to help in the kitchen, even though it often ends in tears and frustration. This time she was able to stick with it, asked for help, listen to my directions and corrections when I showed her how to peel longer ribbons, and worked really hard over 2 days to accomplish peeling one apple in one long ribbon. There were many apples with very short pieces, and it was exciting to see the joy in her when she would manage to peel a longer piece, and she kept at it until she was able to do the whole apple!"
Way to go, Matilda!
Today, we cheer for Kirsty! Kirsty is a determined, strong-willed girl who wants to do the same things as everyone else. She is 9 and has OCNDS. Her parents recently shared: "Kirsty passed her kickboxing grading, going from a white belt to a red belt. Given her difficulties with short stature, low muscle tone and learning difficulties, it is a major achievement that she managed to learn the syllabus including locks, holds and throws. Kirsty always watched her siblings doing kickboxing from the sidelines and as soon as she was big enough for the uniform, she joined the class where she has worked very hard to learn the red belt syllabus and pass the grading."
Way to go, Kirsty!
Today, we cheer for Robin! Robin is a joyful, playful, cheeky and adorable little boy who brings joy into everyone’s life! He’s passionate about all things with wheels, playing games and being around people. Robin's parents shared with us: "When Robin was diagnosed with OCNDS, we were told that he may not be able to acquire basic skills or learn concepts such as sorting colors or shapes. During COVID lockdown in Austria, Robin learned to separate his colors!!! To introduce the concept of colors to him, we bought a color matching/sorting game. He picked up on it so quickly and plays this game every single day! Robin surprises us nearly every day with his abilities! Perhaps it’s less than what many two-year-olds can do, but whatever he does, he does extremely well. We couldn’t be prouder."
Way to go, Robin!
Today, we celebrate Cody! Low muscle tone is one of the symptoms of OCNDS. This is Cody when he was 2. His parents explained, "Cody had such low muscle tone that when sitting on a horse he had to be supported. Here, he is able to sit on his own. Cody was diagnosed at age 16 with OCNDS. Several 100's of hours of physical therapy went into being able to sit by himself on the horse. Cody is quick to smile and he thanks people for helping him. He can brighten your day."
Cody always brightens our day! Cody is now 19. He still loves to horseback ride! It is an activity he looks forward to every week!
Way to go, Cody!
Today we celebrate Jules! Jules is 12 years old. Her parents describe her as a budding chef, spicy, clever, determined, and full of life. She has OCNDS and is non verbal. This past year, she started calling her dad, "dada." Most children reach this milestone in their first year. Jules' dad shared with us: "As the years passed, I thought Jules would never call me, dada. I've had many dreams where I hear her voice and she speaks. When Jules said dad for the first time, I thought I was dreaming. I love her voice. Every time she says dada I am reminded to never give up and never underestimate the amazing things she is capable of. Her body is failing her due to OCNDS, however she fights like crazy every day to reveal all the words and thoughts swirling in her clever brain. Dada loves you, Jules."
Today, we cheer for Jules! Way to go, Jules!
Today, we cheer for Harper! Her family recently shared with us:
"Harper was diagnosed with OCNDS at 5 years old. She didn’t crawl until 14 months. She has always been delayed in every milestone. She works so hard to do simple tasks her peers can easily do without thinking about it. She reminds us to never give up! We celebrate every milestone because it is a reminder of how hard she has worked to get here. COVID-19 restrictions have given us more time to work on skills. And for the first time ever, Harper learned to ride a bike without training wheels at 8 years old. She loves riding her bike, and now does tricks, riding with one hand going up and down ramps and over curbs."
Today, we celebrate Harper! Way to go, Harper!
Today we celebrate Adelynn! Adelynn is almost 3 & has OCNDS. Her mom recently shared: "During quarantine, Adelynn learned how to crawl after working so hard in therapy. She is the sweetest toddler and a social butterfly. Her therapists all say she is a motivated toddler who never gives up!"
Today, we celebrate Adelynn! Way to go, Adelynn!
This is Jordan. He is 7 and has OCNDS. His mom wrote with joy: “Today is the day. Jordan finally was able to hold the spoon on his own and eat by himself!!! I'm so..PROUD!! After so many struggles he finally DID IT!!! GO JORDAN!!”
Each Monday join us to celebrate #MilestoneMondays. We will highlight an individual living with OCNDS and celebrate a milestone that they have achieved. Those living with OCNDS have many daily challenges. Some challenges are as basic as swallowing, toileting, dressing themselves, putting on a seatbelt, and making friends. Individuals with OCNDS have to work harder than the average person to reach the smallest of milestones. Today, we celebrate Jordan's #milestonemondays.
GO JORDAN!
Today we celebrate Abigaile! Her mom shared: "My daughter has always struggled with school, but with the help of all her teachers and support staff, she graduated high school. She also won an award for her cooking class. All her family that could make it helped celebrate this amazing milestone, and I honestly can't wait to see the things she will accomplish in her future. So proud of you, Abigaile. You made us all so proud! This is a big accomplishment for her as we didn't think she would be able to go to high school, but we managed to find the perfect match as they helped her in any way they could, from getting one on one support to having a safe place to relax and listen to music when she was overwhelmed with school."
Way to go, Abigaile!
Today we celebrate Rowan! His mom shared: "Rowan worked hard all summer at the pool. His dad took him for a few hours every day, and so many milestones were achieved: holding his breath underwater and floating on his back. The biggest breakthrough happened with a kind neighbor who has been helping: his very first swim strokes! Rowan has had low muscle tone and gross motor delays since birth. He struggles with balance and is very cautious. He struggles to access playground equipment and has always been behind his peers in physical activities. To see him swimming is just amazing, and makes us so proud!"
Way to go, Rowan!
Today we celebrate Kirsty! Her parents shared: "Kirsty is a cheeky and demanding child who is very happy and loving. She has always been afraid of loud noises like the vacuum cleaner, motorbikes, hand dryers and hair dryers. This year she has allowed us to use the hair dryer on her, overcoming her fear of this loud noise and the feel of the air on her head. Celebrating this because she is still afraid of other loud noises and some lights, so hopefully this is a step towards overcoming the fear of other loud noises."
Way to go, Kirsty!
In middle school you showed your talent of memorizing the school and where your classes were by the 3rd day and you ditched the para in the hallway.
In high school your positive attitude was amazing. To you every day was AWESOME! Then Covid hit. With your help we made a schedule to keep up with learning and you came up with creative ways to keep busy by playing indoor mini golf in our house.
My heart burst with pride when you walked across the stage at graduation.
With confidence you started the 18 months of education with the VSP- vocational skills program. You continued to grow learning different jobs and putting forth your best effort.
The last three summers you participated in the SWEP -summer work experience program at the local grocery store. Two summers bagging groceries. The last summer working in the produce department stocking fruits and vegetables. One day I overheard the one manager talking about how this one student took the bad cantaloupe to the trash shoot and if he could bowl it down the shoot and it would explode you called it a strike.
Because of your positive attitude and hard work when I went in to get a letter of recommendation for you to work in another store and they said “no." They wanted you to come back and work in their store.
So this picture is of you on your first day of work. Stocking fruit and vegetables and gaining work skills. We (your parents) are so proud of you. You continue to show the world what people with OCNDS can do."
Way to go, Cody!
Today we celebrate Davi! His mom shared: "Davi didn't walk until he was 2 years and 2 months old (after lots of physiotherapy and horse therapy since he was 18 months). In March, Davi seriously broke the bone of his right thigh. He overcame the doctor's forecast and, only 10 days after the accident, started to try walking again by holding our hands, or holding onto the furniture and walls. He is now running and climbing again. We are so proud of him. He is so brave and determined and wants to do things by himself without any help. Davi is the joy of our lives. He teaches us every day to value the simplest beauty of life."
Way to go, Davi!
Today we celebrate Oscar! His mother shared: "Oscar was diagnosed with OCNDS at 5 years old. It is difficult for him to hold a pencil and write. He is 9 years old, and this is the first time I've seen him write all this without giving up. I just helped him to spell the words, "Happy Birthday. 12 years from Oscar." He is looking forward to waking up his brother with a song, flag, and presents. He really loves to please others...especially his brother. This is the first birthday card he has written all by himself. Oscar is a happy, social, and loving boy. He reminds us to be grateful for small things!"
Way to go, Oscar!
Today we celebrate Rowan! His mom shared: "Rowan has graduated to a new pair of shoes, and in our world that is a major accomplishment! Rowan struggles with change. He will wear a pair of shoes until they are literally falling apart. We've been working on trying to transition to a new pair. We place the new pair next to the old pair at the door, and gently encourage him to start wearing the new ones. And we always try to maintain the sameness of brand and color as much as possible. It takes time and patience, but eventually when he decides to make the switch, we celebrate that a new shoe era has begun! We celebrate a new pair because it marks another milestone where he has overcome his struggles with routine, sensory sensitivities, and anxiety to move forward with something new. Rowan is a prankster and an animal lover, a collector and organizer, he loves squishy and soft textures and any kind of swing!"
Way to go, Rowan!
Today we celebrate Kirsty! Her mom shared: "Kirsty always hated having her hair washed in the bath. She would scream in the bath and refuse to get in the tub, until we discovered that we can wash Kirsty's hair in a way that is acceptable to her. We are careful not to let any water get in her face and now she is happy to have her hair washed in the bath. We encourage Kirsty to tip her head right back and use a flannel to shield her eyes. Autistic traits are part of OCNDS, and Kirsty struggles with sensory issues and irrational fears, so overcoming this phobia was a massive achievement. Kirsty is resilient and tries hard to overcome her difficulties. She has to battle every day to do things that other children find easy, but she never gives up."
Way to go, Kirsty!
Today we celebrate Ellie! Her mom shared: "Our sweet Ellie turned 8 last month! She showed off her incredible reading skills by reading a birthday card from her aunt and uncle. At times, Ellie finds learning to be difficult in comparison to her peers, but she has always loved to read. Ellie is proud that she is now reading above her grade level. Ellie is a kind, sweet, happy kid who always makes our days better."
Way to go, Ellie!
Today we celebrate Adelynn! Her mom shared: "We have worked so hard for this moment. Our Sweet Adelynn is working on walking without her gait trainer, and she is rocking it! We can’t wait to see her continue to defy what doctors said she wouldn’t do! Adelynn has always struggled to reach milestones, and we have been in intensive therapy for years. We are so proud of how hard she works and how far she has come! Adelynn is the most loving and determined little girl! She is funny and can make any room light up. Everyone who meets her instantly falls in love with her!"
Way to go, Adelynn!
Today we celebrate Adelynn! Her dad shared: "Adelynn decided to stand up and walk on her own. Adelynn was diagnosed with OCNDS at 2 years old. She didn't walk until she was 6 years old and always has had difficulty with simple walking due to hypertension. She struggles daily. She works so hard to do simple tasks her peers can easily do without thinking about it. We celebrate every milestone because it is a reminder of how hard she has worked to get here. Adelynn loves coloring and making people laugh."
Way to go, Adelynn!
Today we celebrate Jules! Jules' mom said this about her recent milestone: "A remarkable development has unfolded: our sweet Jules, at the age of 14, has begun using her AAC device to convey her love. The sheer beauty of hearing those four precious words, "I love my mom," emanating from her communication device brings tears of joy and reinforces the profound truth that it's never too late to acquire a skill. This newfound ability serves as a poignant reminder to never take anything for granted. These incremental steps (inchstones), these glimmers of joy, underscore the power of her resilience and determination. Each day with Jules unfolds as a new chapter, offering us fresh opportunities to celebrate the extraordinary inchstone moments that shape our unique journey."
Way to go, Jules!
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We are focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and supports necessary for happy and full lives. CSNK2A1 Foundation is operated and funded through a committed team of volunteers, advocates and researchers.
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