Heroes Who Inspire All of Us

This is Lucy! Lucy has Spinal Muscular Atrophy Type 1. When she was four months old - some signs started to arise about lack of muscular strength with holding up her head while sitting up. Her day does not begin like the average humans - it begins with treatment. She is assisted with breathing by the use of a vent and then gets situated with her hand and leg braces, following with a shaker vest. It doesn’t end there - there are several machines to help her with breathing, suction, and then feeding. However, this treatment isn’t done with the help of a hospital or of a nurse, but all of her family! The whole family helps to make Lucy comfortable and aid her with what she needs. It’s a hectic morning with many tasks to complete, but everyone supports and assists Lucy the whole way. Lucy doesn’t let her SMA burden her at all - she handles every trial and tribulation amazing and loves to enjoy life, goes to school, eat mashed potatoes, sing in the car and is filled with humor and love! Her family had nothing but kind and amazing words to say about Lucy, and we encourage you to go to her tagged instagram page and watch the video in the bio. Her life is precious, and her family shows her endless amounts of support driven by faith and hope - they don’t let her SMA consume them, but keep trekking on. “My perspective is that life is hard for everyone, and this is just something that life has thrown us and it is possible to be happy and for your child to be happy” - Lucy’s mom. Thank you Lucy and your family for letting us share your story! Your support and love for Lucy is amazing and we wish you the best. Never stop having faith! 

We have great news and some fantastic news! Cody had a dentist appointment to make sure there were no infections in his mouth before a bone marrow transplant as well as a cleaning and he is all clear! ❤❤❤But the most FANTASTIC news of the day is... we got a call from the bone marrow transplant coordinator and there are 10 yes I said 10 PERFECT matches for Cody!!!!🙌🙌🙌🙌🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻 HALLELUJAH!!!! Right now they are contacting a 24 year old male to have him come in for blood work tomorrow! Cody's doctors will meet tomorrow and we will meet with them next Wednesday and this will start moving really quickly! We are so thankful and know that the Lord has paved the way! He is so very faithful! :-) thank you all for your prayers! Keep praying because we know God is answering our prayers! I am crying tears of joy as I write this!!!😅😅😅 And by the way, Cody's t-shirt today says "Jesus Is My Super Power! I can do all things through Christ who strengthens me! Philippians 4:14" :-) And boy is He! 

Aiyana has been a warrior since the womb. Despite medical professionals saying she wouldn’t make it week by week, she fought and was brought into this world. Aiyana has a rare type of Trisomy 18, which is associated with abnormalities in several parts of the body. The doctors said that they have never seen anyone else with the chromosome arrangement that she has. That being said, Aiyana is a miracle baby - a unicorn. Aiyana beat the odds of her disease and is fighting, receiving in-home therapy everyday as well as an abundance of love from her family members. Aiyana’s mother, Tiffany, told us, “That’s always been my hope in sharing -- that people will learn about Trisomy 18 and see that it isn’t a cookie cutter disorder. All uniquely special in their own ways but all 100% worth the fight.” We are happy that you and your family fought this fight alongside Aiyana and she was brought into this world. Aiyana has power in her and bravery and that has remained with her since the womb and will be by her side her whole life! Thank you for sharing your fight with us, we hope the best for you and your family! To learn more about Aiyana and watch her journey, follow her on Instagram @allforthem.

Our Fenrici heroes inspire us with their resilience and bravery. Ali is no exception! Ali was diagnosed with leukemia four years ago. After not going into remission in 2018 as hoped, Ali had to have a bone marrow transplant alongside the required 2 years of chemo treatments. However, Ali had difficulty finding a match for a bone marrow transplant and while waiting for her cells, her leukemia spread to over 50% of her marrow. Despite the trials and tribulations, Ali received results that the CAR-T therapy she went through worked and she was cancer free. Additionally, Ali was able to receive her mother’s bone marrow in January of this year. How special and amazing is that? Unfortunately, despite being a 100% donor, Ali relapsed in April of 2019. That being said, Ali and her family decided to do the new dual CAR-T trial in Stanford to fight her relapse. Shown in the picture, Ali is wearing a necklace that says, “She Believed She Could, So She Did”. Ali - you are an incredible hero that has fought many battles and did not let them defeat you. We BELIEVE you can, too! It is incredible watching and reading Ali’s story and all it encompasses through the words of her mother, Heather, and the ups and downs that have accompanied it. We thank you Ali, and family, for allowing us to truly inspire others with your positivity and fight you’ve had along this journey! 

Say hello to Remi! Remi, like our previous hero post of Halle, is one of 100,000 babies diagnosed with Pfeiffer Syndrome, a genetic mutation. One of the characteristics of Pfeiffer’s is craniosynostosis which is a premature fusion of the skull. In Remi’s case, she has a bicoronal fusion. Pfeiffer syndrome is categorized in three different types depending on the severity of the symptoms. Remi is a very mild type 1 and has had two surgeries to correct the fusion and expand her skull. Apart from her fusion, she has some deformities in her thumbs and toes which will be corrected next year. Her family says that Remi is the light of their lives and has taught them what strength and resilience looks like. Incredible! Bravery comes in all shapes and sizes - and Remi embodies it with a smile on her face. Thank you Remi’s family for sharing your story with us to inspire others battling with pediatric rare disease!