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!
Great picture of another little warrior! Audrey is a 9 year old fighter. She was diagnosed with a brain tumor in July of 2017. In August, Audrey found out that the tumor was an aggressive stage 4 cancer. As a result of surgery from where the tumor was, half of Audrey’s face became paralyzed. After several rounds of Chemo outpatient and inpatient, Audrey had her last round of Chemo in October of 2018! You are an inspiration Audrey - your positivity and love isn’t hidden even if it can’t be fully shown. Thank you for allowing Fenrici to share your story - we appreciate you and the fight you have been through!
This is Julia - although she looks like a happy, adorable baby… her life has not always been easy. In utero, Julia was diagnosed with several congenital heart defects. After being born, she spent her first eight months of her life in the Cardiac intensive care unit… she underwent four open heart surgeries and numerous cardiac caths. Despite all the efforts, Julia’s heart did not get better. Julia has now relocated to a different part of Florida. She has been listed as status 1A on the UNOS transplant list and is awaiting a heart transplant. Affected children show you how precious and fragile life is - nothing is certain. Julia’s family cannot change or control what has happened in the past, they can only hope for a brighter future. What they can control is their attitude about their situation, and they are smiling and radiating positivity through and through! A huge thanks to Julia and her family - your story is one to be told and we appreciate you allowing us to. Keep smiling - it may be stormy now but it can’t rain forever!
Have you ever heard of Pfeiffer Syndrome? Chances are you haven’t - Pfeiffer syndrome only occurs in about 1 of every 100,000 children. It is a genetic disorder that affects bones of the skull, hands and feet. The overall shape of the head and face are affected due to the premature fusion of certain said bones in the skull. Halle was one of the 100,000 children born with Pfeiffer Syndrome. At 5 weeks old Halle had her skull completely removed to relieve pressure and give her brain room to grow. But that was not the only surgery she had to endure, as she had two others. Halle is an AMAZING 1 year old. Despite everything she’s gone through, there are countless pictures of her adorable smile to show she isn’t defeated and she will not be defeated. Thank you so much to Halle and her family for allowing us to share her story. The love she receives from her family is evident and she is so blessed.
Then... and now. An incredible story lived and told by Kendra and Maliyah Herrin. The Herrin twins, now 17, were born conjoined leaving them with only one kidney and a shared liver. They underwent surgery when they were four years old attempting to separate them. The surgery was successful, but did leave both of the twins with one leg. One of the twins, Maliyah, had to undergo two kidney transplants after the first kidney received at 5 years old, started to reject. They are very grateful for Maliyah’s second chance and share their life story actively on YouTube and Instagram. Being conjoined at birth is an extremely rare form of pediatric disease, making it a disease that not everyone knows about or discusses. Fenrici wants to bring awareness to these rare pediatric diseases in hopes of increasing education and research to provide solutions. We are happy that Kendra and Maliyah got the help they needed and had a successful separation surgery as well as Maliyah having a successful second kidney transplant! Fenrici thanks Kendra and Maliyah for allowing us to share their story and bring more awareness to their experiences! Keep being an inspiration, Herrin twins!