On the outside, Milaniya looks and feels like a typical 11-year-old. Full of life and not shy, Milaniya loves the company of friends and family who are drawn to her outgoing personality. But on the inside, Milaniya’s body is fighting a rare genetic disorder – Alagille syndrome.
The effects of Alagille syndrome vary greatly from one person to another. Some people experience such minor symptoms that they go undiagnosed; others experience life-threatening complications in multiple organ systems of their body. In Milaniya, the disease mainly impacts her liver - causing jaundice, itchiness, and nutritional concerns - and will eventually require a liver transplant. Since there is no known cure, Milaniya keeps the symptoms at bay with medication and focuses on one day at a time.
Stephanie, Milaniya’s mom, had heard of Make-A-Wish, but did not think her daughter qualified because her condition isn’t considered terminal. Enter wish volunteers and Stephanie’s coworkers at Bank of America, Jennifer and Edgar. They helped Stephanie understand that a wish is an important part of the medical treatment and healing process for children battling critical conditions, including Milaniya’s.
When it was time to discover Milaniya’s one true wish, Jennifer and Edgar sat down with her and discussed all her options. Pretty quickly, Milaniya realized what she wished for – to go to Hawaii and swim with dolphins!
Stephanie’s coworkers soon got to planning a big surprise for Milaniya. In front of more than 50 of Stephanie’s work colleagues, friends, and family, Milaniya found out her wish was coming true at The Wishing Place. The party was Hawaiian-themed and even featured Hawaiian dancers!
“I was shocked. I didn’t know what was happening. I had to think for a moment,” said Milaniya of the moment she arrived for her surprise wish reveal. “Then when [Edgar] told me my wish was coming true to swim with the dolphins…I was surprised, and I was so happy!”
Not long after, Milaniya was on her way to Hawaii! While the family had fun activities planned throughout their trip, swimming with the dolphins was the true highlight for Milaniya.
Stephanie will never forget the unwavering support of her community and the lifetime of memories her family created.
“What this wish means to us is it allows us to take a step back and not focus on what she deals with day to day, but to just enjoy life. Enjoy life, enjoy each other, enjoy the moment, be present. To see your child filled with joy fills your heart,” said Stephanie.
“There’s no price that you can put on the experience that we had. It was everything that I would have wished for as a parent.”
If you’d like to be part of helping wishes like Milaniya’s come true, click here