November 28, 2018

Categories: 2018 - Kids

Meet Elsa!

She was born in 2014 and immediately experienced complications, such as low blood sugar and bilirubin. After a few days in the hospital’s special care nursery, the newborn screen test revealed that Elsa had a rare metabolic disorder called Galactosemia. She was taken by ambulance to a NICU at another hospital where she was given transfusions and additional treatments for about a week. 

After coming home, Elsa had to follow a strict diet and has been doing so ever since. She gets her blood drawn every few months to check her galactose levels. At about a year old, Elsa’s doctor detected a heart murmur and found out she has a hole in her heart. Elsa will be undergoing a catheter procedure in late December to repair this defect. 

Galactosemia can cause speech and motor delays in many cases, so Elsa attends a special preschool where she receives speech therapy a few times per week. Sheloves play dates with friends, dancing, singing, playing in sandboxes, Peppa Pig, Disney Princesses, animals, babies and her big brother David. She smiles all the time and loves to make other people smile too! Besides her smile, another thing people immediately notice is her hair. It is actually another genetic condition called “Uncombable Hair Syndrome”. It is speculated that Albert Einstein also had it!

Princess Elsa is going to meet Princess Elsa in Disney World!

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Nominate or Submit Your Child

Do you know a family with a child facing serious health challenges who could benefit from a magical experience? Nominate them for Jay’s Juniors! Our program is dedicated to providing unforgettable moments and joyful experiences for children battling chronic and terminal illnesses. By nominating a deserving family, you can help us bring smiles, hope, and cherished memories to those who need it most.

Categories: 2018, KidsPublished On: November 28, 2018