Meet AlexAndrea! She is an avid dancer, and you can always find her busting a move! She has such an unbelievable fighter spirit and has accomplished SO much despite her diagnosis. Read on to learn more about her absolutely amazing accomplishments and her love for cuddling :)
1. To start off, can you tell me a little bit about AlexAndrea? AlexAndrea is a very happy and lively 3-year-old! She has multiple congenital anomalies like pulmonary valve stenosis (a condition which narrows the pulmonary valve opening and slows blood flow), hypotonia (decreased muscle tone), clubbed feet, sleep apnea (breathing repeatedly stops and starts), Chiari malformation (when brain tissue extends into the spinal canal), and needs an NJ tube to eat and drink. Her diagnosis is so rare that it has no actual name and her condition is only one in five worldwide. Doctors said she wasn’t going to make it; however, she proved them wrong! After 8 months in the NICU and having undergone multiple surgeries including heart surgery, we were finally able to take her home. 2. What would surprise people the most about AlexAndrea? People would be surprised by how well she dances! When she hears music, she’s always busting a move, which is why we always have something playing in the background during physical therapy! Music really gets her moving :) 3. What does AlexAndrea love to do? What is her personality like? AlexAndrea LOVES to cuddle and dance! She is very happy and playful, and she is such a fighter! 4. What are some of AlexAndrea's best strengths? AlexAndrea thrives on being helpful and learning how to do things herself. She is also very resilient and doesn't let anything limit herself from accomplishing amazing things! 5. What is a recent accomplishment/milestone of AlexAndrea? AlexAndrea has accomplished some pretty amazing things this year! She is able to sit by herself, she recently just started crawling backward last week, and she finally said “mama”! 6. What are some of your favorite resources as a parent? Youtube! Through our lifestyle channel, I was able to connect with other special needs families, especially special needs mommies. Youtube is such an unbelievably supportive community, and I highly recommend it for any other special families out there. 7. What has AlexAndrea taught you? AlexAndrea taught me so much about life! The biggest thing she has taught me is to keep pushing forward no matter the limitations because we can still learn to thrive, even with life's imperfections. 8. If you could tell the world one thing about AlexAndrea, what would it be? AlexAndrea is God's miracle who came to show us to never give up, to trust, and to have compassion for others.
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Meet AbdulRahman! He is the happiest soul you will ever meet and you can always find him playing with his toy cars for hours upon hours! Read on to learn about AbdulRahman's Nager Syndrome diagnosis never stopping him from living his life to the fullest, the children's book his mother wrote which celebrates children with special needs, and more!
1. To start off, can you tell me a little bit about AbdulRahman? AbdulRahman is currently 3 years old and at 2 months he was diagnosed with Nager syndrome, which is a condition that less than 100 people around the world have. Nager syndrome is a congenital condition which affects the bones and tissues in the face, the cheekbones, eye sockets, jaw, ears, and the thumb of both hands are either underdeveloped or absent. Since AbdulRahman has a small jaw, it affects his breathing which is why he has a tracheostomy (a tube inserted into his body which safely delivers oxygen to the lungs) and a feeding peg. 2. What would surprise people the most about AbdulRahman? People are always pleasantly surprised by how active and happy he is! Whenever they see him for the first time, they assume that his diagnosis also affects his intelligence, which is a HUGE misconception. Nager syndrome only affects physical appearance so when AbdulRahman does something, even if it’s as small as trying to sing or dance to a nursery rhyme, people look at him with amazement and surprise. 3. What does AbdulRahman love to do? What is his personality like? AbdulRahman LOVES cars! He can sit for hours upon hours and play with them, arranging them in particular rows. He is also very active and loves to run (and oh boy can he run!). AbdulRahman is a very happy soul. He has a very generous yet strong character, and even thought he cannot talk, that does not stop him from achieving so many milestones and living his life to the fullest! 4. What are AbdulRahman's best strengths? AbdulRahman is a strong and independent boy, and his condition doesn’t limit him from doing what he loves! He is very creative and most of all he is resilient. 5. What is a recent accomplishment/ milestone of AbdulRahman? AbdulRahman started school the beginning of November 2020. He has never been anywhere without me or his dad, so as you can imagine, all the anxieties were kicking in! However, to our surprise, AbdulRahman was simply amazing! The fact that he could go to school and come home without us being around was a huge step for him. For us, this just showed that our baby is no longer a baby! Also, since AbdulRahman's right hand thumb is underdeveloped and the one on his left-hand is absent, doctors thought that he would have difficulties holding a pen or ball. However, like he has done so many times in the past, Abdulrahman has outperformed their expectations. 6. What are some of your favorite resources as a parent? Thanks to AbdulRahman, I wrote my first children’s book which teaches children about what a tracheostomy, feeding peg and a hearing aid are and that everyone is different in their unique way. Most importantly, I wanted to create a book not just for my son but a book that represented children with special needs as the main character of a book and as the beautiful individuals that they are. 7. What has your son taught you? AbdulRahman taught us the meaning of unconditional love and that life is full of surprises. With every challenge we face, we have a choice: either dwell about something we have no power to change like my son's condition or to embrace and accept what we have and create unique opportunities. 8. If you could tell the world one thing about AbdulRahman, what would it be? Regardless of his physical appearance and all of his medical equipment, he is just like any other kid who simply loves to play with his friends and explore the world around him. Resources mentioned: Same and Different children's book: https://www.sameanddifferent.uk/ Meet Lucas! He has such a fun personality, and he loves spending time with his family and watching the television show The Golden Girls with his grandmother. He is such a fighter and has defied many odds since the day he was born! Learn more about Lucas' determined nature in the interview conducted with his mother down below!
1. To start off, can you tell me a little bit about Lucas? Lucas is two and a half years old, and he was born with a rare genetic condition with no medical cure called Nonketotic hyperglycinemia, or NKH, which results in an accumulation of glycine in the body's tissues and fluids. This condition is so rare that it's considered an "orphan disease,” (approximately 500 for NKH), and there is little to no funding for research to cure it. NKH causes many challenges with development such as seizures, autism, and cerebral palsy, 2. What are some of Lucas's challenges? I would say upper body strength and head control is his biggest struggle currently. Lucas is also diagnosed with CVI, which means his brain does not communicate with his eyes. One year ago he was diagnosed legally blind, and he currently receives therapy from the Foundation for the Blind. Instead of milestones, we call them inch stones and some days millimeter but we keep working consistently! 3. What is Lucas's day to day life like? Lucas's life pretty much revolves around therapy and doctor appointments. His great grandmother is trained in several of Lucas's needs and provides them even on the weekends. There are six caregivers that work around the clock for Lucas, which he has done ever since he was in the NICU and he is constantly supervised by me and other family members every single day. 4. What would surprise people the most about Lucas? He loves music! It always puts him in a better mood, and he loves to dance along. He especially loves watching the television show The Golden Girls, which he watches with his grandmother everyday! 5. When someone meets Lucas for the first time, what do you hope they think? Most people believe he is super special and that he will be healed. Strangers who have never met him will constantly send messages to him every day about dreams they had or prayers for him, so I have no doubt that his story will help others on their own journeys. 6. What are some of Lucas's likings/hobbies? What is his personality like? Lucas definitely has a funny personality! He is calm most of the time but he can throw a fit if warranted. 7. What is the most important thing for someone to understand about Lucas? We are 100% committed to do whatever it takes for Lucas to be healed. We work nonstop with researchers, fundraising, and exploring alternative healing options. We mostly rely on prayer and we ask the Lord to lead and guide us each day. 8. Has Lucas's diagnosis affected your job? Yes, it has affected all of us. I have turned my business and running of the company over to others. I only oversee big decisions, and I quit working the first year completely. Everyone has altered their life and schedules for Lucas. 9. What is a recent accomplishment/ milestone of Lucas? He has recently starting to make crawling motions on the floor. 10. Are there any resources which you recommend if anyone wants to learn more about Lucas's condition(s)? SavingLucas.com has in depth information about Lucas' condition and ways anyone can help with his journey. 11. Has the COVID-19 pandemic affected Lucas's day to day life? Well, in some ways yes and many ways no. Before the pandemic, we already lived a pretty socially distanced life due to Lucas's needs, What changed the most is that everyone is home now for an extended period and all of his doctor and therapy appointments for the most part were moved to Zoom. Having a neurological appointment on Zoom is not quite the same when the doctor cannot examine the child, and physical therapy online definitely does not have the same benefit. However, we are still incredibly grateful for the technology to at least keep moving with Lucas' appointments even if it is slower than it would be in person. 12. If you or Lucas could tell the world one thing, what would it be? Trust God. They said he would never leave the NICU. They were wrong. We knew he would and he has been defying them since. God has a bigger plan for Lucas. Meet Tad! This little guy just turned 3 on November 5th (happy late birthday!)! He loves getting in trouble and being mischievous! Tad's family and friends have given him so much support after he received his CHARGE syndrome diagnosis, and he is so determined to enjoy life to the fullest! Read the interview below with Tad's mother to learn all about Tad's journey and his superpower to spread joy wherever he goes :)
1. To start off, can you tell me a little bit about Tad? Tad recently turned 3 on November 5th...I'm so excited and sad that my baby is growing up! Tad has a genetic defect called CHARGE syndrome, and each letter stands for a defect that is common to those effected by it. He also has a few heart defects, with his main defect being HLHS (hypoplastic left heart syndrome) where his heart never fully formed. He also uses a trach, a g-tube, and a pacemaker. 2. Can you tell me a little more about Charge Syndrome? Tad’s main challenges, now that his cardiac status is more stable, is that his vestibular system (which provides a sense of balance) is very affected. He is missing many pieces in his ears which affects his balance and he is struggling to accomplish milestones for his age. However, he is amazing and is learning each day how to push past any obstacles that comes in his way! 3. What is Tad's day to day life like? Even before the COVID-19 pandemic, Tad has always lived a very sheltered life. His immune system can not handle even the most simple interactions most babies can have. In order to keep him safe, we have limited all interactions with others outside our house. As Tad gets older, he gets stronger but we take many precautions to keep him safe as even a common cold can wipe him out. Tad has a very busy schedule with appointments and therapies, but he personally thinks all his therapists and doctors are his best friends and usually doesn’t mind his busy schedule. 4. What would surprise people the most about Tad? I think the biggest surprise with Tad is reading his medical chart and then seeing him in person. He truly is incredible, and like lots of other children with complex medical history they defy the odds and have such a joy for life! 5. When someone meets Tad for the first time, what do you hope they think? When someone meets Tad for the first time, especially if they are not in the medical community, seeing some of his differences like his trach and gtube can look different; however, I hope they can see past that and see him for the wonderful, happy little guy he is. 6. What does Tad like to do for fun? Tad like most toddlers and boys loves making messes and getting into trouble. We have two little dogs and he thinks it’s hilarious to crawl and chase them around all day. And he loves to make mom and dad laugh! 7. What is the most important thing for someone to understand about Tad's condition? Something I wish people knew more about is how common congenital heart diseases are. It's the most common birth defect and the highest cause of infant deaths, but it is not talked about enough in our community. And in regards to CHARGE syndrome, if you ever have the pleasure of meeting a charger, I hope you get to experience their drive and determination. We could all learn a few things from them! 8. Has Tad's diagnosis affected your job? Thankfully I have an INCREDIBLE family, I mean incredible. I had just started college when I found out I was pregnant, and when we got Tad's CHD diagnosis in utero, my aunt allowed us to stay with her to be close to one of the best heart surgeons who gave Tad a chance at life. And I have been even more fortunate to be a stay at home mom for Tad to focus on him and everything he needs. 9. Are there any resources which you recommend if anyone wants to learn more about Tad's condition(s)? Sisters by Heart is a wonderful organization bringing awareness to Hypoplastic Heart Syndrome (a heart defect) and the CHARGE Foundation provides resources for families effected by CHARGE. 10. Has the COVID-19 pandemic affected Tad's day to day life? If so, how? We have lived in this lockdown type environment since Tad was born, so it hasn’t really affected much of Tad’s schedule besides some cancelled appointments and therapies. It has been weird to see everyone live the type of life we have simply just adapted to for Tad’s well-being, and I know so many medical parents who would agree. 11. If you or Tad could tell the world one thing, what would it be? Don't judge a person by their abilities or disabilities. Honestly, I wish Tad could give a lesson on joy to everyone that comes his way because the amount of joy his little body contains is amazing and everyone could benefit from that! Meet Eleanor! She is the sweetest 1 year old who loves to play on the swings (she would probably stay on it for HOURS if her mother let her!) and eat Mac and Cheese. She just achieved one of her biggest accomplishments - climbing 2 steps all by herself!
Even though Eleanor has Chung Jansen Syndrome, a rare condition with about 40-50 reported cases worldwide, her cheerful spirit has never diminished and she is so determined to pass through any obstacle that comes her way! Read on to learn more about Eleanor's funny personality, her love for listening to Baby Shark on repeat, and more :) 1. To start off, can you tell me a little bit about Eleanor? Eleanor is such a funny, sweet, and sassy gal, and she will be 2 on December 14th! Eleanor got diagnosed in July of 2020 with an ultra rare genetic disease called Chung Jansen Syndrome. This syndrome was discovered in 2018 and there are about 40-50 reported cases WORLD WIDE! With Chung Jansen Syndrome comes with a variety of symptoms that can range from mild to severe which include intellectual/ developmental disabilities, hypotonia, behavioral problems and she will be more at risk for seizures and onset obesity. 2. What are some of Eleanor's challenges with Chung Jansen Syndrome? Eleanors biggest challenge right now is Hypotonia, also known as low muscle tone. She JUST started being able to pull herself up to stand and is insanely proud of herself! While many would see her as being extremely delayed with her gross motor skills due to her age- she has actually made HUGE strides these past six months that include crawling, weight bearing and pulling herself up to stand. 3. What is Eleanor's day to day life like? Eleanor is currently going to a special needs school 3 days a week every other week and she receives PT, OT, speech, and feeding therapy while she is there. Her school has been absolutely fantastic at providing her with all the resources she needs to thrive. Before she was able to attend school, she received PT, OT and Feeding therapy through Nationwide Childrens Hospital. Her diagnosis has not changed her day to day life in a negative way - instead it has helped her get everything she needs to help her succeed. 4. What would surprise people the most about Eleanor? Just how determined and smart she is! I feel like when you tell people you have a special needs kiddo- they almost pity you and I do not want that…ever. Eleanor is so bright and is destined to do big things despite her disability. 5. When someone meets Eleanor for the first time, what do you hope they think? I hope they see the potential she has like I do. 6. What are some of Eleanor's hobbies? What is her personality like? She loves to make us laugh and to be silly (she gets that from her big sister!). Her favorite things to eat (never thought I would say that!) are Macaroni & Cheese, Yogurt, Spaghettios, and crackers, and she can watch to Baby Shark, Elmo, Daniel Tiger, and Mickey/Minnie Mouse all day if she can! Her all time favorite pastime is to swing- she asks me to push her in her swing multiple times a day & she would probably stay in it for hours if I let her! 7. Has Eleanor's diagnosis affected your job? I was working part time when Eleanor was younger, but once her delays started to become more apparent, I had to quit in order to take care of all her needs/appointments. 8. What is a recent accomplishment/ milestone of Eleanor? Just today as I was cleaning our basement, she climbed 2 steps all by herself without me knowing! 9. Are there any resources which you recommend if anyone wants to learn more about Chung Jansen Syndrome? Yes! My Youtube channel Empowering Eleanor talks about her diagnosis and everything that comes along with it. 10. Has the COVID-19 pandemic affected Eleanor's day to day life? If so, how? It definitely did when COVID started and Eleanor was not able to attend school anymore. She was just getting comfortable with her teachers and her environment and I was so sad that she was not able to go in person anymore. 11. If you or Eleanor could tell the world one thing, what would it be? See the ABLE not the LABEL :) Meet Mira! She's an adventurer - always exploring nature and ready to go camping! Despite Mira's physical limitations caused by a rare mutation of the GNAO1 gene, she joyfully pursues what she loves,even starting the company Mira Moves Mountains (https://www.miramovesmountains.com/)
with her mother to showcase her sweet tooth and love for baking! This interview is conducted with Mira's mother, in which we discuss about Mira's condition, their company, her goofy personality, and more! 1. To start off, can you tell me a little bit about Mira ? Mira is a happy, confident, and adventurous four (almost five!)-year-old girl! She is affected by an extremely rare mutation of the GNAO1 gene, which essentially results in choreoathetoid cerebral palsy. She experiences two severe movement disorders, chorea (involuntary movement), and dystonia (involuntary muscle contractions), neither of which responds particularly well to medication. Our best hope for controlling her movements will be deep brain stimulation, but she is not old enough yet to qualify for that procedure in the United States. Mira is nonverbal, non-ambulatory, and is 100% dependent on a jejunostomy tube for her nutritional needs, which is a tube placed through the skin to deliver food and medicine. She can take very small tastes of food orally and she absolutely loves to bake! We have recently started a company, Mira Moves Mountains, which will feature dog treats Mira helps bake, baking mixes Mira helps measure and prepare, as well as some other fun goodies. Mira loves to explore new environments and recently started camping around the midwest with her family! She has two sweet doggies and a little brother who is her best friend. Mira makes quick friends with everyone she meets and is on a mission to make adventure more accessible! 2. What are some of Mira's challenges with her mutation of the GNAO1 gene? Being totally nonverbal, it is sometimes difficult for Mira to communicate with others. She is working hard at learning an eye gaze system; however, it has been challenging to get the device she needs and be covered by insurance, and sometimes Mira (and her caregivers) get frustrated when she can't fully express herself. Her severe movement disorders also cause her pain and anxiety, and it is difficult for her when her body is completely out of her control. However, despite her challenges, she is a very happy and patient child. 3. What is Mira's day to day life like, and has it been affected by her diagnosis? Mira is currently attending pre-K virtually through our local school district, but she spent nearly 4 years at a special needs preschool in our metro area. She currently receives outpatient therapy four times a week and therapy through our district four times a week. She's a very busy gal! Some of the services she receives include speech therapy, physical therapy, occupational therapy, assistive technology, aquatic therapy, and hippotherapy (therapeutic horseback riding). In addition, some of her medical devices include a GJ tube, a suction machine, and a cough assist machine, and she uses a wheelchair and an adaptive stroller, 4. What would surprise people the most about Mira? Mira does not have any cognitive delays and is very communicative and bright, despite being nonverbal. She has the same interests as all of her peers and loves to play and chat! 5. When someone meets Mira for the first time, what do you hope they think? I hope people see Mira for who she is and not her physical limitations. I hope they think she is the funny, sweet, silly, and smart girl that her friends and family know and love her for. 6. What are some of Mira's hobbies? What is her personality like? Mira loves exploring nature and going camping, playing with baby dolls, doing art projects, and watching her favorite shows. She is extremely goofy and playful, and she is always up for an adventure! 7. What is the most important thing for someone to understand about Mira's condition? Mira's condition is extremely rare, so we are in rather uncharted territory. We don't fully know what to anticipate for her future, but we do know the condition is variable day to day, sometimes even hour to hour and seems to be progressive. We hope those who encounter her bear in mind the unpredictability of her disease and understand how fragile she is. Her symptoms can change rapidly, without warning, and dramatically increase in severity. Being a part of Mira's life means being patient, calm, and staying present to meet her exactly where she is during any given moment. 8. Has Mira's diagnosis affected your job? I am no longer able to work full-time, though being a special needs parent led me to an amazing part-time career related to developmental disability that I absolutely love and wouldn't trade for the world. I am also now working with Mira on a private small business venture called Mira Moves Mountains and it's awesome to get to work on a passion project with my amazing daughter :) . 9. Are there any resources which you recommend if anyone wants to learn more about Mira's condition(s)? Gnao1.org is a wonderful organization which spreads awareness and provides resources to those effected by the GNAO1 mutation! 10. If you or Mira could tell the world one thing, what would it be? Kindness is good, inclusion is better. Meet Maryam! She is a bright little girl who is a great speller and can play many tunes on the piano.
Maryam has CHILD syndrome, a rare condition that effects about 60 people worldwide. Still, she has achieved so much, with her most recent accomplishment being taking her first walking steps! This interview is conducted with Maryam's mother, and we discuss more about Maryam's wonderful achievements, the effect of the COVID-19 pandemic on Maryam's day to day life, and more. 1. To start off, can you tell me a little bit about Maryam? Maryam is 5 years old. She was born with CHILD syndrome, a rare syndrome that affects about 60 people in the entire world. Her right side is smaller than her left side and she is missing a kidney on that side. She was born without hair on the right side as well. Her right hand and foot are also smaller than her left. CHILD also comes with a skin condition so she needs a certain cream daily to prevent her skin from flaking. 2. What are some of Maryam's challenges? Because Maryam's right lung is small, her lung collapsed when she was 6 months old which forced her to get a trach and she is currently vent dependent. Through therapy though, we are weaning her off the vent slowly and hope that her lung grows healthy enough to be ok without it. Also, because she has trouble swallowing and retaining food, she has a GJ tube for eating continuously. Her ability to walk has been affected because of her feet difference in height, but with therapy and a shoe step, she has been working on walking and strengthening her muscles. 3. What is Maryam's day to day life like, and has it been affected by CHILD Syndrome? If so, how? She has a morning and night medicine routine to keep her lungs open and healthy including a chest PT vest which helps keep mucus from building up in her lungs. She gets physical and speech therapy weekly to help her progress and get stronger. 4. What would surprise people the most about Maryam? She is a great speller. Even though she can't use her voice, she is able to communicate through spelling on her keyboard. She surprises us with the requests she makes and makes us laugh often. She loves to read and catches onto mistakes if we say the wrong word. She is also very attune to music and beats, and knows how to play several songs on the piano! :) 5. When someone meets Maryam for the first time, what do you hope they think? I hope they see her for the smart intelligent human she is. I hope they see her as a 5 year old who just wants someone to read to her and play with her like any other 5 year old. 6. What are some of Maryam's likings/hobbies? What is her personality like? She is very particular and orderly. She loves to keep her toys a certain way and always orders us around! She loves music, bubbles, and books. You can read to her all day and she would love it! She has an ear for music too and that's one of her favorite therapies! 7. What is the most important thing for someone to understand about Maryam? That although she is fragile and has medical equipment, she is just like any other kid who loves to be read to and entertained. 8. What is a recent accomplishment/ milestone of Maryam? She recently took a few walking steps which was a huge deal! 9. Are there any resources which you recommend if anyone wants to learn more about CHILD Syndrome? She has a Facebook page called CHILD syndrome - Team Maryam that you can follow to stay updated on her progress. 10. Has the COVID-19 pandemic affected Maryam's day to day life? If so, how? For sure. Because she is medically fragile, we have been strict on not inviting friends or family over which has made it difficult for me and her. She leaves the house less and visits family less because of it. So it definitely limits the people we see. 11. If you or Maryam could tell the world one thing, what would it be? No obstacle is too hard to overcome. Every obstacle is merely an opportunity to grow and reach a higher potential. Meet Miriam! She is a mighty 5 year old girl who always has a big smile on her face, and she loves to play with her 3 puppies and make new friends. Miriam has Cerebral Palsy, and she and her family strive to raise awareness and bring inclusion for it every day! This interview is a little different and is told from Miriam herself! She talks about her loving family, her adoption story, a day in her life, and more! 1. Hello! To start off, can you tell me a little bit about yourself? Hiya!!! I’m Miriam, I’m a strong and mighty little 5 year old girl who loves adventure! I was severely drug exposed while I was in the womb and spent 27 days in NICU detoxing. I’m adopted and mom and dad were there the day I was born and every day since. My birth mom did a beautiful thing when she made the decision to share me with mama and daddy. She has since passed away and our family will always love her and her family for the choice she made. The drug exposure caused Hypoxic Ischemic Encephalopathy (HIE) which subsequently has led to a Cerebral Palsy diagnosis (clinically dyskinetic CP) but mom thinks I have mixed CP. It took the start of seizures and diagnosis of epilepsy at 2.5 yrs old to actually have my MRI read correctly and receive my long awaited for diagnosis of CP. Medical stuff aside! I love to make new friends, I love music, eating, and being with family! I have 3 puppies that watch over me good and an endless amount of people who love me! I use a talker to talk and I’m working on graduating from a walker to canes to walk! If I’m going a distance I also have an adaptive stroller! I also have some really cool foot braces that help reset my feet in alignment! My CP affects my whole body but it doesn’t stop me! As a family we share my journey with all the world through my page to advocate, bring awareness, to make new friends, and to share the love and message of Jesus - how his perfect plan brought us together and how he fearfully and wonderfully made me just like I am. When medical standards say I shouldn’t have even been born, God created me just right! 2. What are some of your challenges? The biggest challenges I face every day are mostly around communication and trying to break through my physical limitations! I may be considered semi-nonverbal but I know everything I want to and try to say. I have a device for talking but I feel like it slows me down, even when mom tries to explain that it helps everyone understand me. I work hard every day to grow my strength physically so I can be my most independent self, whatever that looks like, which changes every day. 3. What is your day to day life like? My day to day life probably looks very similar to the routine of most children, its just a little slower and adapted to my needs. We incorporate some physical activity every day and often that includes some physical therapy. I'm homeschooling right now because of Covid so that is also a part of my daily routine. 4. What would surprise people the most about you? Often the able bodied community assumes that because I'm semi-nonverbal that I'm not intelligent or that I cannot hear. So it surprises people that I know what they are saying or I can hear them. 5. When someone meets you for the first time, what do you hope they think? When someone meets me for the first time, I hope that they think I'm a fun, smart and joyful girl to be around and that they would love to be friends with me. 6. What is the most important thing for someone to understand about yourself? The diagnosis of CP is very broad and often very vague. The most important thing I think anyone can consider about all people with disabilities is to assume nothing more than good things. Instead of making assumptions, spend time getting to know that person if you what to know what they are like! 7. Has your diagnosis affected your parents’ jobs? Mom stays at home with me because of the extent of help and care that I need! 8. What is a recent accomplishment/ milestone of yours? After my first intensive clinic ever I have learned to go from the floor to standing independently and then follow with taking some independent steps. This is a huge accomplishment for me! 9. Are there any resources which you recommend if anyone wants to learn more about Cerebral Palsy? Moms favorite resource are other parents and families that are walking through similar seasons as we are and the number one place she finds that is her Instagram community! 10. Has the COVID-19 pandemic affected your day to day life? The main way Covid has affected my life is the limit it has put on interacting with my friends and family! I miss seeing and playing with all of my friends! 11. If you could tell the world one thing, what would it be? Say Hi! Be Kind! Be a friend! Meet Leo! He is a 7 month old boy who has a condition called Goldenhar Syndrome, which typically involves one side of the lower half of the face being underdeveloped. Still, Leo is such a charming and lively little boy who loves to socialize with new people! I conducted an interview with Leo's mother, and we discussed about Leo's condition, his cheerful personality, and more.
1. To start off, can you tell me a little bit about Leo? Leo is 7 months old, and he was born with a condition called Goldenhar Syndrome. Goldenhar syndrome affects each individual differently, but it usually involves one side of the lower half of the face being underdeveloped. There has yet to be a discovery as to why this occurs. Leo’s Goldenhar Syndrome resulted in him not to have a right eye, a missing right side of the lower jaw, an abnormal right ear, a unilateral cleft lip, palate, and nostril(all on the right), an extra digit on his right hand, and skull abnormalities. Leo is also deaf and is showing delays in his physical development. 2. What are some major challenges with having the condition Leo has? Some of the major challenges with Leo’s condition is the fact that he needs 24 hour monitoring due to his trachy and having to tube feed him instead of orally. 3. What is Leo’s day to day life like and how has it been impacted by his diagnosis? Leo has a night nurse for 5 nights a week to make sure he is being monitored during the night and do his nightly cares. We are often busy with countless appointments and travelling to and from the hospital. We rarely go anywhere apart from his appointments as it’s quite time consuming and stressful to get Leo and all his gear packed and ready to leave the house. 4. What would surprise people the most about Leo? I think people are often surprised by how happy he is. Even after his surgeries and being poked with needles, he still manages to smile and laugh. 5. When someone meets Leo for the first time, what do you hope they think? I always hope they see him as a strong happy baby boy who loves to laugh and meet new people. 6. What are some of your child’s likings? What is his personality like? Leo is very cheeky and very charming. He loves to do things that get a reaction out of people like pull his feeding tube and laugh every time you pry the tube out of his hands. He will kick whoever is sitting closest to him, grin at you until you smile back and pile all his toys and blankets on his face. Leo is very sociable and is so excited to see new people. 7. What is the most important thing for someone to understand about Leo’s condition? Leo has no idea at the moment that he looks different or is slightly different and that is the way I’d love to keep it. Leo has such a big personality and his facial differences shouldn’t stop you from getting to know him. 8. Has Leo’s diagnosis affected your job? I was a mechanic before I had Leo and always thought I’d go back to work after a year. However, due to Leo having so many appointments and needing constant monitoring, I am unable to return to work. 9. Are there any resources which you recommend if anyone wants to learn more about Leo’s condition(s)? I honestly just used Google to find out about Goldenhar Syndrome. Since everyone is affected in varying degrees, it’s hard to learn about how it may or may not affect someone unless you ask. So I’m always happy for people to ask. 10. Has the COVID-19 pandemic affected Leo’s day to day life? Yes, when we were in lockdown, a lot of Leo’s appointments and surgeries were pushed back or on hold. Now, they all seem to be happening at once. 11. If you or Leo could tell the world one thing, what would it be? Learn how to ask questions. If you don’t know what or how then just ask and apologize if it’s considered rude. I love telling people about my special boy. Meet Amelia! You can always find her playing on the swing and swimming. She has Apert Syndrome, which is a bone fusion condition. However, she is the sweetest little girl and has the superpower to make anyone and everyone smile! I conducted an interview with Amelia's mother, and we talked more about Amelia's diagnosis, her hobbies, and more.
1. To start off, can you tell me a little bit about Amelia (her age, more about her condition(s), etc)? Amelia just turned 4 years old! She has Apert Syndrome which in short is “premature fusion of bones”. It encompasses other conditions such as cleft palate, syndactyly, polydactyly, craniosynostosis, klieppel fiel, and proptosis. 2. What are some major challenges with having the condition Amelia has? A major challenge with having Apert Syndrome is all of the surgeries she has to endure along with gross and fine motor skills. She’s cognitively “normal” but since she has physical differences, she struggles with some everyday activities. 3. What is Amelia's day to day life like and how has it been impacted by her diagnosis (for example, therapy, medicine, etc)? Her day to day activities are pretty average for a normal 4 year old. She gets therapies (occupational and physical) in her preschool and now that she’s past most of her major surgeries, we have approximately 2 physician appointments a month. 4. Are there any medical treatments Amelia follows? The only medical treatment Amelia follows is her therapies! 5. Has Amelia's diagnosis affected the way she learns? I don’t think she’s affected on how she learns. She wears glasses and has a hard time writing, but she’s still a little smarty pants! 6. What would surprise people the most about Amelia? I think the most surprising thing about Amelia is how “Normal” she is! She’s hilarious and is just like any other 4 year old even though she looks different! 7. When someone meets Amelia for the first time, what do you hope they think? I hope they see past her differences. I hope they think how funny and kind she is. 8. What does Amelia like to do for fun/hobbies? Amelia is pretty easy to please. She loves playing with dolls or paw patrol figurines. She likes swimming and playing her Kindle. She enjoys swinging and gymnastics. 9. What is the most important thing for someone to understand about Amelia's condition? The most important thing to understand is that she’s just like any other kid! Treat her with kindness! 10. Has Amelia's diagnosis affected your job? I think Amelia’s diagnosis has definitely affected my job. I treat those with special needs with a little more patience and normalcy then I used to. I also sometimes get anxiety in the OR thinking of what Amelia has to endure. 11. Are there any resources which you recommend if anyone wants to learn more about Amelia's condition(s)? To learn more about apert syndrome you can check out her facebook page “Amelia’s Adventure with Apert Syndrome” or Children's Craniofacial Association. 12. Has the COVID-19 pandemic affected Amelia's day to day life? If so, how? She missed out on therapies because of COVID-19. Other than that, we’ve been doing our best to keep her life as normal as possible! 13. If you or Amelia could tell the world one thing, what would it be? Choose Kind. In a world where you can be anything, be kind. |