Meet Lochlyn! She is truly the sassiest and most determined little girl, and one can find her watching Frozen 2 (and ONLY Frozen 2) and stealing her brother's toy cars. Read on to learn more about Lochlyn's love for Legos, her most recent accomplishment of learning how to walk, and more!
1. To start off, can you tell me a little bit about Lochlyn?
Lochlyn is 20 months and was diagnosed with Achondroplasia Dwarfism, which results in short stature, the day after she was born. Doctors first told us she would pass away shortly after birth due to a fatal form of Skeletal Dysplasia; however, as days went by we were shown time and time again that Lochlyn had every intention of fighting and thriving! Fast forward to now, Lochlyn's healthy and loves to make others days a little brighter through her funny and sassy personality :)
2. What are Lochlyn's interests? What is her personality like?
Lochlyn has her moments like other toddlers, but she really is the happiest and most laid back girl! She loves watching Frozen 2 (and ONLY Frozen 2), playing with her Duplo Legos, and stealing her brother’s cars.
3. What is a recent accomplishment/milestone of Lochlyn?
She just started walking!! She’s been working so hard for the last few months and her hard work paid off. She has been so motivated through this whole process and her face just lights up as whenever she takes her steps.
4. What are some of Lochlyn's best strengths?
She is truly the most determined child I’ve met. If she wants it, she’ll figure out how to get it and always proves she deserves the same as everyone else. She doesn’t let anything or anyone stop her!
5. How do you advocate for your daughter?
I call us “quiet advocates” because we only use our platform and Instagram account to share her life. Our hopes in sharing her daily life is that others will see her in a positive light and that her life is worth living. Even though she may have her differences, she deserves to find acceptance amongst everyone!
6. What are some of your favorite resources as a parent?
My most used and favorite resource is other parents! We’ve made so many friends along the way and it’s reassuring to talk to other POLPs (parent of little person) about their experiences and building such an amazing community. From them, I can learn, speak to, and lean on someone that truly understands.
7. What have you learned from raising Lochlyn?
I feel so grateful to be Lochlyn's mother. She has taught me to use my voice, to stand my ground, and trust my intuition. She is the prime example of cherishing whats happening in the present and that the doctors aren’t always right.
Meet Wynter! This amazing little human is a ray of sunshine, and she loves to make other people smile! She has been accomplishing incredible milestones as of recently, including learning how to grip toys! To learn more about Wynter's love for songs, what her family's mission as an advocate for their daughter is, and more, read the interview conducted with Wynter's parents down below.
1. Hello! To start off our interview today, can you tell me a little bit about Wynter and her journey with OFD14?
Wynter is 20 months old, and she was born at 37 weeks via C-section. However, what we thought would be an average c-section turned into something we would have never imagined. She got her trach (a tube which helps with breathing) & gtube (a tube which helps with feeing, hydration, and medication) at 2 weeks old, and she was diagnosed with epilepsy, charge syndrome, OFD14, chronic lung disease, and coronary heart disease while at the hospital. Once Wynter was released from the hospital, she received a diagnosis of cerebral palsy, global developmental delay, legal blindness, and kidney reflux. However, Wynter is perfectly imperfect, and her rarity makes her unique and beautiful! Although she has many specialists and therapists, her smile never leaves her face and she shows growth in the smallest of ways. Her journey has most definitely been a learning experience for us all, but we just take it one step at a time :)
2. What does Wynter love to do? What is her personality like?
Wynter loves to make people laugh and if you laugh, she tries to do whatever it was again. She is always so happy and can make anyone, even strangers smile! She loves to be held by other people as well, and she can always be found listening to songs and hearing others read books.
3. What would surprise people the most about Wynter?
Whenever anyone hears about Wynter's needs, they always assume that she was a premature baby in the level 4 NICU. They are always surprised to learn that she is not!
4. What are some of Wynter's best strengths?
Wynter's best strengths are her persistence and personality. Even though she cannot verbally let us know how she is feeling, her emotions and character shine through. She has overcome so many challenges, and proves to everyone that comes her way that she deserves to be treated like the absolutely AMAZING person she is!
5. What is a recent accomplishment/milestone of Wynter?
She recently learned how to grip toys and use them properly, which has been a huge thing we have been working on!
6. What are some of your favorite resources as a parent?
Lily’s list: An AMAZING resource which works with pediatric patients that have a need for home health nursing.
Joseph’s Genetic journey: Provides free Gtube pads and belts for any child who needs it!
Merediths’s miracles: Specializes in helping families financially during medical emergencies.
I highly recommend these amazing initiatives to other special families!
7. What is your mission as you advocate for Wynter?
My mission is to advocate for inclusion and answer any questions anyone may have about our journey because I strongly believe education leads to awareness! Although Wynter may have her differences, she deserves the chance to find belonging amongst everyone. I hope to share our journey so others can not only learn more about Wynter, but also be inspired to make their own communities kinder and more inclusive.
Meet Madden! He LOVES the water, and if he could, he would swim in the pool all day long! Madden is such a ray of light in so many people's lives, and even though he is nonverbal, he is so social and can make truly anybody (even strangers!) play with him. To learn more about his AMAZING accomplishment of learning how to wave, the uplifting and amazing support his family has received through social media, and more, read the interview down below conducted with his mother.
1. Hello! To start off, can you tell me about Madden?
Madden is 5 (almost 6) and has a rare genetic syndrome called Angelman Syndrome which causes him to have significant developmental delays, seizures, sleeping issues, being non verbal (most likely during his entire life) and a lot of excitement. We finally got the diagnosis a year ago after many genetic tests, MRI’s, therapies, and EEGs. He is a very happy boy, and has a smile that can truly light up any room!
2. What are Madden's best strengths?
Besides his insanely strong grip when he gets a handful of your hair, Madden shines with light. His spirit shines beyond his physical and mental limitations. He is a perfect example of finding joy in the little things in life.
3. What has Madden recently accomplished?
Madden recently learned how to wave on command. It is about the cutest thing I have ever seen and he loves to wave at everyone and anyone! Another big milestone was being able to drink out of a straw. We have always been worried about his liquid intake, and this has been such a game changer!
4. What do you love most about Madden?
Madden is very social. He likes to look you in the eyes and thrives with one on one attention. He can make any stranger play with him. He is extremely good at non verbal communication and can make most people understand him with his grunts and gestures.
5. What are Madden's hobbies?
Madden LOVES water (a trait of angelman syndrome). He could swim in a warm pool or water hole all day long! He also loves watching other children play. He will stand on a playground and be so happy watching the kids around him running and laughing. He also loves watching real people do things on YouTube, such as getting on trains, singing, doing magic tricks etc.
6. Do you have any recommendations for other Angelman families?
Yes! My biggest resource has been my Angelman syndrome Facebook group I am in. We all take care of children with this rare syndrome, and our stories are almost exactly alike. I go to them when I have a bad day, medicine question, and anything else Madden related.
7. What important life lessons has Madden taught you?
Madden has taught me, my husband, and our 2 daughters how to be more understanding and kind people. We have learned the power of service and its ability to bring peace and love into our home as we serve Madden and his needs. We have also learned how huge the special needs community is and all the things we can do in this world to improve the day to day lives for those with disabilities.
8. When someone meets Madden for the first time, what do you hope they think?
Madden was meant to be exactly how and who he is. God doesn’t make mistakes. He has a big purpose on this earth.
Meet Lucas! This sweet boy loves to watch Youtube and can always be found playing out in the sun or watching movies with his siblings. Lucas has always been supported by a tight knit community, and he inspires everyone to be kind and inclusive to individuals with special needs. To learn more about his amazing accomplishments, the wonderful nonprofit Lucas' mother started in honor of him, and more, read the interview down below!
1. Hello! To start off, can you tell me a little bit about Lucas?
When Lucas was 20 weeks in utero, he suffered a stroke and the doctors said that there was very little hope that he would survive. However, he proved them wrong! He did live and was born with profound and complex needs including autism and hydrocephalus, which is the buildup of fluid in the cavities of the brain which requires a shunt. Lucas was delayed and non verbal for most of his life until recently. He is able to say a few words now! He needs assistance in every aspect of life including mobility, eating, bathing, dressing, and speech.
2. What would surprise people the most about Lucas?
How much he truly does understand. At first glance, it would appear as if he’s not interested in most conversations; however, that is usually not true! He is very attentive and works very hard to understand what others are saying.
3. What does Lucas love to do? What is his personality like?
Lucas is more of an introvert and often keeps company by himself. However, he loves spending time with his siblings, watching Youtube, and reading rhyming stories like “Brown Bear, Brown Bear”. He also loves to soak his face in the sun and is always down for a fun picnic at the park!
4. What are some of Lucas's best strengths?
His tenacity and persistence. Every single thing that people said he would never do, he has accomplished.
5. What are some of your favorite resources as a parent?
I love the Facebook group Finding Coopers Voice, which is a safe space celebrating the unique challenges of parenting special needs children. I also started a non profit in Lucas’s honor called The Lucas Project (https://www.thelucasproject.org/) which provides recognition, resources, and respite to special needs families.
6. What has your son taught you?
7. If you could tell the world one thing about Lucas, what would it be?
This kid is going to change the world in some way.
Meet Paige! This sweet five-year-old little girl loves to play dress up, watch Disney princess movies, and solve puzzles. She recently became a big sister and has shown so much patience and care towards her newborn sister! Read on to learn more about Paige's recent accomplishment of learning how to jump, how she inspires people to treat individuals with differences as the beautiful individuals that they are, and more!
1. Hello! To start off our interview today, can you tell me a little bit about Paige?
Of course! Paige is a five-year-old little girl with genetic deletion syndrome at genetic coordinates 3q22, which has caused global delays and a rare eye condition called BPES. However, this doesn't stop her from teaching and inspiring the people around her to treat everyone with kindness and patience!
2. What are some of Paige's hobbies?
She loves Disney princesses, Paw Patrol, playing with her dollhouse, lego, and puzzles, and can often be found wearing some sort of costume!
3. What are some of Paige's best strengths?
Paige has this amazing blend of being dainty, delicate, and sweet but also tough, resilient, and assertive. The independence, maturity, and strength she has shown ever since she recently became a big sister has made me view her in a new lens and realize she is not my little baby anymore!
4. What is a recent accomplishment/milestone of Paige?
Recently Paige learned how to jump, which is a skill she has been working on in physio for years! When she does it she is so proud of herself and just beams with joy. We are so proud of her and can tell that it is really fun and rewarding for her. Next, we are working on having her do stairs independently. She is very close and is working very hard toward all of her goals!
5. What has Paige taught you?
She has taught us to see the world in a beautiful spectrum of strengths and weaknesses and that if you work hard and be patient - anything is possible. She has inspired our friends to have conversations with their children about those with facial differences and those whose brains work differently, and they all have so much love for Paige. At just five years old, Paige has been such a light in so many people's lives and has already inspired some really important learning.
Meet Oli and Theo! These 4 year old twins are the sweetest little humans. They are very active as well and love to spend their time swimming and relaxing! To learn more about their love for music, Oli's recent accomplishment of saying his name, and Theo's amazing accomplishment of standing all by himself, read the interview down below conducted with their mother!
1. To start off, can you tell me a little bit about Oli and Theo?
Oli and Theo are bright little twins who are 4 years old! They are micro preemies and were born at 26 weeks. Theo has spastic quadriplegic, which is a form of cerebral palsy that affects the whole body. Oli has mild cerebral palsy, vocal chord and tongue paralysis, growth hormone deficiency, and chronic bronchitis which is a reactive airway disease. However, their conditions don't stop them from being the sweetest little humans!
2. What would surprise people the most about Oli and Theo?
So many people question if they are twins because they are simply just the total opposite of each other! Oli loves conducting music and has an amazing ear to hold the beat to just about any song, and Theo has an outstanding memory better than myself!
3. What does Oli and Theo love to do? What are their personalities like?
Oli has a loving and caring soul. Even though he can’t express himself with words just yet, he uses his facial expressions and his own beautiful ways of communication to interact with others. He is also very active! He loves building towers with magnet tiles or blocks, playing music, soccer, swimming, and cooking.
Theo is a thinker and is always observing. He can just melt your heart with his smile! He is a sweet and happy little boy who is always swimming, singing, painting, reading, or cooking.
4. What are some of Oli and Theo’s best strengths?
Oli is always helpful, eager, and empathetic and we always call Theo "Curious George" because he is honest, hardworking, caring & kind.
5. What is a recent accomplishment/milestone of Oli and Theo?
Oli is saying his name. We still need a lot of work with his articulation, but he is trying very hard and we are so proud of him! He is also swimming with a noodle.
Theo is pulling all by himself to stand and is working very hard on climbing to his bed by himself!
6. What are some of your favorite resources as a parent?
Instagram is our main resource! Following other families like ourselves has been so helpful and gives us the encouragement that we are not alone in this journey. Our favorite Instagram pages are Weflowtherapy and Smiletherapyforkids. Both accounts give such amazing tips and information for us ambitious parents to understand more about our children!
Centers who give information about different types of therapies, treatments, exercises, and activities have been a wonderful resource as well!
7. What have your sons taught you?
Raising twins with cerebral palsy has been quite a difficult task but a joyous one at the same time. We are not afraid to say we have children with cerebral palsy because we embrace it. This is our “normal” life and the twins make us so proud and grateful for these amazing experiences we get to have, from celebrating every milestone they hit to throwing a party! The future is worrisome but we embrace it one day at a time.
8. If you could tell the world one thing about Oli and Theo, what would it be?
Oli and Theo are the true definition of warriors and are fighting for their lives. Preemie babies are much stronger than we think.
Meet Genell! She is a sassy nine year old twin, and you can always find her dancing along to music and watching Elmo! She has such an optimistic mindset towards her treatments and a loving and supporting community always by her side. To learn more about the amazing eye gaze device she uses to communicate, her chromosomal deletion, and her charming personality, read the interview below!
1. To start off, can you tell me a little bit about Genell? Genell is 9 years old and is a twin! She lives with a chromosome deletion that is so rare that it does not have a name and has some other common conditions including Cerebral palsy, epilepsy, needing a G-tube for feeding, and being nonverbal. She most recently started using an eye gaze device which says words based on where her eyes are placed on the device!
2. What would surprise people the most about Genell? She has a big personality and loves music!
3. When someone meets Genell for the first time, what do you hope they think? I hope that they see the normalcy in her. Although she may look different, she is still a 9-year old that has feelings.
4. What does Genell love to do? What is her personality like? Genell loves music and Elmo. She is a sweet and sassy little girl and brightens a room with her smile!
5. What is the most important thing for someone to understand about Genell? I want someone to understand that she is smart. She may not be able to express what she is feeling, but she knows when someone has entered a room. She knows when her favorite songs are on. And most importantly, she can tell you what she wants or doesn't want with her own wonderful ways of communication, even if they may be out of the ordinary.
6. Are there any resources which you recommend if anyone wants to learn more about Genell's condition? Due to her condition being so rare, there are not any specific resources regarding her condition. However, there is a wonderful organization called UNIQUE (rarechromo.org) that advocates and provides support for families living with a rare chromosomal disorder.
7. If you could tell the world one thing, what would it be? I would tell them that everything happens for a reason. Whether you understand it or not, learn to accept the unexpected and adjust your mindset.
Meet Nathan! This mighty two year old loves to binge watch Mickey Mouse and Shrek, and he recently just learned how to walk! To learn more about his lung transplant, his absolutely AMAZING motor skills, and the wonderful community his family found through social media, read the interview below!
1. To start off, can you tell me a little bit about Nathan ?
Nathan is 2 years old and he was born with a rare heart condition called Super Cardiac TAPVR. He went for his first open heart surgery at two weeks old, and from the 1st surgery, he developed a very fatal disease called pulmonary vein stenosis. We tried having a second surgery, but that did not help with the PVS. When Nathan was 10 months old, he received a double lung transplant. He had many complications after the transplant and spent over 9 months in the ICU. However, Nathan is truly a warrior, and his obstacles have not stopped him from being the loving, active, and cheerful boy that he is!
2. What would surprise people the most about Nathan?
Nathan is an extremely happy human! Looking at him he might seem a little different, but he doesn’t act that way. You would never know that he has been through so much.
3. What does Nathan love to do? What is his personality like?
Nathan is constantly on the go! He recently learned how to walk, so he’s just all over the place! He loves playing, learning and watching Mickey Mouse and Shrek :)
4. What are some of Nathan's best strengths?
Nathan’s fine motor skills are amazing - we never thought this would be his strength since he’s been sick for so long but he caught up so quickly!
5. What is a recent accomplishment of Nathan?
Walking!!! Just a few months ago Nathan couldn’t stand up, but now he’s a walking toddler. It’s difficult to keep up with him and his vent but we manage to chase him around the house with it :)
6. What are some of your favorite resources as a parent?
Other parents have been such a supportive community, especially families going through similar struggles as us. Social media these days makes it easy to connect with many families around the world.
7. What has Nathan taught you?
Nathan has taught me to alway find the positive in any hard moment and always finding something to celebrate no matter how small.
8. If you could tell the world one thing about Nathan, what would it be?
He never stops smiling :)
Meet Lily! She is a social butterfly whose smile lights up the room, and she loves to make people laugh. In fact, she gives a hilarious eyebrow raise whenever she thinks anyone is crazy! Read the interview with Lily's mother down below to learn about Lily's CDKL5 diagnosis, her love for school, and more!
1. To start off, can you tell me a little bit about Lily?
LilyAnna is 18 years old with CDD (CDKL5 deficiency disorder), which is a rare genetic neurological disorder. She had her first seizure at 3 weeks old and never developed with typical milestones, but it wasn’t until she was 6 that we got the diagnosis of CDD. She is severely delayed in all areas and struggles with epilepsy; however, she loves to eat (especially sweets!), loves to laugh at her family members, and gives a hilarious eyebrow raise whenever she thinks we’re crazy!
2. Can you tell me more about CDKL5 deficiency disorder?
Epilepsy is a huge challenge with CDD. We’ve tried everything: implanted devices, brain surgery, diets, just about every medication possible, herb, and supplements just to name a few. Name it and we have tried it. Movement is also a huge struggle for her. She has apraxia and every single movement she is able to make is extremely hard for her to make. She is also non verbal and her lack of communication can be frustrating for her and us.
3. What is Lily's day to day life like?
Lily is in an inclusive classroom with a wonderful teacher! She usually goes to school all day; however, due to the pandemic, she lost school for most of the year and we aren’t sure when she will
return :( She loves school, and losing that socialization has been really hard for her. She has physical and occupational therapy at home too and we work with her with stretches because she can get stiff. She sees several medical specialists and our schedule is pretty full with all the special people in her life who help make her life manageable!
4. What would surprise people the most about Lily?
Lily has a great sense of humor! She laughs at all the right times and even the very inappropriate times, which shows she really fits in with our family :)
5. When someone meets Lily for the first time, what do you hope they think?
I hope they think she is a bright young woman and talk to her as so.
6. What are some of Lily's hobbies? What is her personality like?
Lily is quiet and laid back, loves movies and sugary sweets, and laughs and makes noises whenever the room is quiet! She has her favorite people and can tell more with one eyebrow raise than most people can with all of their words.
7. What is the most important thing for someone to understand about Lily?
Everything she does takes full effort and intention. If she is tired she can’t communicate. It’s never a lack of her not wanting. Everything she does takes a lot of effort.
8. What is a recent accomplishment/ milestone of Lily?
At 18, Lily recently started raising her right arm in the air. She was never able to do this and we all get a kick out of it when she does it!
9. Are there any resources which you recommend if anyone wants to learn more about CDKL5 deficiency disorder?
CDKL5.com is a wealth of knowledge which educates others about CDKL5!
10. If you or Lily could tell the world one thing, what would it be?
Don’t sweat the small stuff!
Meet Bristol! She LOVES being the center of attention, and one can always find her pulling pranks on people, playing with Barbies, or enjoying the scenery on long hikes. She has such a positive attitude towards her Cystic Fibrosis treatments and is very aware about the importance of staying safe during the COVID-19 pandemic...how WONDERFUL is it that she can understand all of this at just 4 years old?! Read on to learn more about her brave spirit and mature mindset :)
1. To start off, can you tell me a little bit about Bristol?
Bristol is currently 4 years old. She was diagnosed with Cystic Fibrosis - a genetic condition that causes mucus and secretions to be thicker than normal - a week after birth following a bowel obstruction called meconium ileus that required surgery at 3 days old. Despite this, Bristol has the sweetest heart. She is very understanding about her treatments and approaches everything with such a positive mindset!
2. What would surprise people the most about Bristol?
Bristol does not know she has Cystic Fibrosis, so everything she does in a typical day is “normal” for her. This includes her nebulizer breathing treatments, using her vest for airway clearance, and taking enzymes before every meal along with lots of other medications and nutritional supplements. Even thought she is just 4, she knows all the tasks that are required of her day to keep her healthy and strong. And as far as she is concerned, everyone goes to the doctor for check ups.
3. What does Bristol love to do? What is her personality like?
Bristol is full of energy! One can always find her singing and dancing, playing with Barbies, dressing up, going on hikes, doing arts & crafts, cooking, and pulling pranks on people. She loves being the center of attention, making people laugh, and has the kindest heart...and she LOVES animals, especially dogs! The only thing she isn’t a fan of is going to bed haha!
4. What are some of Bristol's best strengths?
Her positive attitude and her compliance to her treatments and medications is a huge strength. She’s also incredibly brave and smart! Even with COVID, she’s so aware of what’s going on. She knows there is a yucky germ going around that’s making people very sick and that it's important to stay at home as much as she can, wear a mask when she goes somewhere, and always wash her hands. How amazing is it that at just 4 years old she can grasp all of that?!
5. What is a recent accomplishment/milestone of Bristol?
She recently started home school preschool and is totally excelling!
6. What are some of your favorite resources as a parent?
CFF.org is an amazing resource which advocates and provides resources for people with Cystic Fibrosis. There is also an amazing Cystic Fibrosis community I’ve met through Instagram who I can learn from, speak to, and lean on.
7. What has your daughter taught you?
In life, unexpected and less than desirable situations will happen; however, that doesn’t make life any less amazing and there is beauty in every situation.
8. If you could tell the world one thing about Bristol, what would it be?
She is worthy. She is worthy of an exceptional life. COVID has especially opened my eyes to how people treat others, particularly people with disabilities or medical complexities. Bristol deserves to be able to enjoy life and not have to risk her health just to do anything. She shouldn’t have to “stay at home” because people refuse to prioritize the health of others.