Meet Nicholas! Nicholas was born with TAR - which as his mom says, “affects his limbs, not his sweet fun personality.” Nicholas is prided on his resilience as well as all that makes him unique! Nicholas was born in 2017 with TAR. TAR is Thrombocytopenia Absent Radius Syndrome, a rare genetic condition that affects his blood as well as his limbs. Due to the effects on the blood, Nicholas doesn’t produce the amount of platelets others do which causes bruising and puts him at high risk of hemorrhage and severe bleeding. To deal with TAR, he receives platelet transfusions every 12 - 14 days. Nicholas has managed to live with giggles and smiles despite TAR and doesn’t allow it to effect him. We can all learn from Nicholas! Thank you, Nicholas for embodying resilience! Thank you Christina as well for allowing us to share his story! Follow their story at @uniquelyusbrothers.
As many of you know, but some of you may not, Fenrici gives back to pediatric heroes with rare diseases and disorders with every purchase. We love to share resilience stories on these heroes and any pediatric heroes to show their strength and bring awareness.
This radiant sunflower is Jackie! If you go to Jackie’s instagram page, @ourjourneyforjackie, you’ll see Jackie smiling, playing sports, having fun with friends… being a kid. In addition, Jackie is a pediatric hero courageously living with CHARGE Syndrome. Charge syndrome is a congenital disorder that affects several organ systems.
At 18 weeks, Jackie’s family were looking to find out her gender, but they also found that she had a heart defect and cleft lip that an ultrasound confirmed. For the rest of the pregnancy, there were several appointments and although they kept a close eye, they did not find out about Charge Syndrome until Jackie was born. However, they suspected Charge Syndrome after she was born. They told Jackie’s family that she could be completely blind and had some hearing issues, in addition to a cleft palate.
By 8 months old, they were told that Jackie would need open heart surgery. By 19 months old, she had at least 6 surgeries. Incredible and courageous for a pediatric hero to go through, as well as the family.
You would never look at Jackie and think she had to deal with all of these challenges, Jackie’s mom said. “Her vision and hearing is better than anticipated”. What an AMAZING thing to hear! Jackie doesn’t let this battle get in the way of her life as a kid. The resilience Jackie has shown is obvious, and we are so grateful to be able to share her story. Support Jackie and her journey at @ourjourneyforjackie.
An emotional and inspiring battle played out by Harmonie in a series of smiling photos, gymnastics tricks (as shown in the picture) and documented achievements! Harmonie is a quadruple amputee and a meningitis survivor. However, if you watch her videos and look at her pictures, you will see that this has NEVER stopped her. A gymnast, a swimmer, a climber, a biker, a friend, a daughter, a girl living her life. Harmonie is all of these things and more, and she is also an inspiration.
Doctors told Harmonie’s parents, “she will not have a quality of life” and everyday her achievements have proven them differently. Harmonie says, “if you believe, you can achieve” and shares with a follower, “[I wouldn’t] worry about what others think because we’re amazing” when they asked what she would say to someone in a similar situation. Limbs don’t make a person, and neither do obstacles! Congratulations Harmonie on all that you continue to do and all the love that you share. Fenrici is supporting you!
Thank you @hope4harmonie for allowing Fenrici to share a little bit of all that you have to offer!
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This handsome boy is Exton, or as Exton’s mom calls him, “homie with an extra chromie”, welcomed into this world February 28th, 2017! Shortly after Exton was born, he had to get a NG (Nasogastric) tube which he had for a bit as he refused a bottle. Between potential fluid in his lungs, open heart surgery at a few months old, several moves to the CCU and more, Exton finally made it home August 16th, 2017! Exton has been a brave warrior since birth to now, including going to the Children’s Hospital of Alabama in 2019 for some sickness but he came back strong and is doing well!
There have been ups and downs, as there are with any pediatric hero, but it is clear how loved Exton is and how much he loves his family. Exton’s page, @extra_exton is filled with photos of Exton smiling ear to ear, but also real and vulnerable moments. We thank Exton’s mom for allowing us to share a small glimpse into who Exton is and we encourage you to find out more! Exton’s page is sure to bring a smile to your face and love to your heart.
Meet Ellie! This smiley girl is 10 years old and a pediatric hero! Ellie is currently fighting B Cell ALL (leukemia). B Cell ALL is Cancer of the blood and bones and although it is the most common of the 3 types, it still is a battle to go through!
Ellie is on a 3 year treatment plan and has started Chemo with several visits to the hospital. Between weekly lumbar taps, meds and transfusions, she’s had over 45 chemo infusions via port and 15 lumbar pokes. Wow! It is amazing what battles pediatric heroes face and we love to share their stories and inspire others. Please follow @ashsara1 to support hero Ellie on her journey! Thank you @ashsara1 and family for allowing us to share Ellie’s story! Prayers to you and your family.