Super Elouise

Super Elouise

Elouise’s TinySuperhero journey began with a whisper of concern during an ultrasound. At just 22 weeks of gestation, Elouise’s parents were faced with concerns about limb differences and heart issues, resulting in urgent consultations with specialists. Diagnosed with TAR syndrome and a congenital heart defect, Elouise’s entered the world with a remarkable spirit that could face any challenge.

While 1 in 100 babies born in the US are diagnosed with a congenital heart defect, TAR Syndrome (Thrombocytopenia-absent radius) is much more rare - estimated to occur in about 1 in 100,000 to 1 in 200,000 live births. TAR Syndrome is a genetic disorder characterized by the absence of the radius bone in the forearms and a reduced platelet count. 

Despite her young age, Elouise has amazed everyone with her resilience. At seven months old, she has not only discovered her hands but also adapted her movements to meet milestones her way. Each achievement, from grasping objects to understanding her own unique ways of interaction, brings immense joy and pride to her family.

One of the most trying periods for Elouise and her family included a 12-day hospital stay far from home, which was particularly tough on her mother. The separation, even if brief, was heartrending yet necessary for maintaining strength and presence for her daughter. Additionally, an incident involving breastfeeding complications led to fears of a GI bleed, but instead, they received reassuring news about her platelet count, marking a small victory in her ongoing health journey.

In public, Elouise attracts attention not just for her undeniable cuteness but also for her unique arms. Her parents embrace these moments as opportunities to educate others about TAR syndrome, fostering understanding and kindness. Elouise’s joyous disposition makes her a magnet for positive interactions, challenging any preconceptions about her differences. We are so lucky to have her with us on our mission to change the way the world sees disabilities!

Elouise has faced physical challenges, like opening her curled hands for the first time—a moment that brought both relief and confirmation to her parents that she would find her way. Though future milestones like sitting up or walking may require special adaptations, her family has unwavering faith in her ability to overcome these hurdles.

When faced with uncertainty or discomfort, Elouise finds solace in the arms of her mother or the soothing sound of her father’s voice. These simple comforts are her safe harbor, providing her with the security to face new challenges.

The path ahead for Elouise includes physical therapies and possibly surgeries to improve her mobility and correct physical issues related to her conditions. With braces to assist her standing and walking, and potential surgical interventions for her thumbs and legs, her medical journey will continue to require courage and resilience.

Elouise is extraordinary not just because of all she has already overcome, but because of the light she brings into the lives of those around her. Her ability to smile and spread happiness, despite the challenges she faces, teaches everyone she meets about the beauty of life and the strength of the human spirit. As she grows, Elouise will undoubtedly continue to inspire and transform the world in her own special way!  We can’t wait to watch her shine!

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