 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.
0 Comments
 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/ |
RSS Feed
