It’s a Saturday afternoon, and 11-year-old Aloukika is dancing in her wheelchair in the middle of her living room. Bollywood music plays in the background as the girl spins in her chair while doing intricate arm motions to the beat.
Her mother watches on, a smile on her face. She knows that this moment of carefree joy once seemed like an impossibility.
That’s because Aloukika was born with a serious birth defect that left her without part of her spinal cord and pelvis. But today, after a major reconstructive surgery at Children’s Hospital Colorado – and support services funded by generous donors – Aloukika is living life to its fullest, wheelchair dance moves and all.
“Children’s Hospital Colorado gave life to our child,” says Aloukika’s mother, Snigdha.
‘We were worried’
Aloukika moved to the United States from India in 2015 when her father got a new job. She had undergone treatment in her home country since birth, but in recent years she wasn’t gaining weight. By the time she came to Colorado, she was experiencing frequent infections and struggling with pain and mobility challenges. Aloukika’s family took her to Children’s Colorado for an evaluation.
“That’s when we learned she had hydronephrosis, which is swelling of the kidneys,” said Snigdha.
Aloukika’s case was severe. Her birth defect severely impacted her urinary tract, causing fluid to build up in her kidneys, which could be fatal if left untreated. Aloukika’s doctors recommended immediate surgery to re-route her bladder and avoid further kidney damage.
At first, Aloukika was terrified. But a Child Life therapist at Children’s Colorado helped to explain the procedure to Aloukika so she knew what to expect.
The Child Life Therapy program at Children’s Colorado provides free counseling and support services to patients and their families. Funded by philanthropic partners, Child Life therapists not only help kids cope with their medical issues, but they also provide emotional support, which research shows is key to kids’ wellbeing.
“The counselor really helped her,” said Snigdha. “We were very worried, but they gave us confidence.”
Aloukika’s kidney surgery was a success, and she was back to Bollywood dancing in no time.
Navigating a new life
When Aloukika and her family first arrived in the United States, they were overwhelmed with the challenges of navigating a new healthcare system – especially given Aloukika’s extensive medical needs. Thankfully, Children’s Colorado stepped in to help. With the help of generous donors, Children’s Colorado provides social workers who can connect families to the resources they need.
“We didn’t expect to have so much support,” said Snigdha. “They showed us how to navigate a new medical system, and they helped Aloukika get a customized wheelchair. We never felt like we were in a new country – all because of Children’s Colorado.”
Donor support has also made a difference in Aloukika’s clinical care.
“Philanthropy is very important to our Kidney Center patients,” said Dr. Danielle Soranno, one of Aloukika’s doctors. “We use donor funds to help patients receive critical medications, as well as provide transportation to receive life-saving care.”
As a result, the Children’s Colorado Kidney Center boasts some of the best outcomes in the country.
Nothing to be scared of
With the help of Children’s Colorado, Aloukika is now an independent, confident child who loves to write fantasy stories and cook Indian food with her father. She recently started an anti-bullying group with her friends, and she loves performing in theater productions through her school and the local Phamaly Theater Company.
“She doesn’t let anything hold her back,” said Snigdha. “She inspires us.”
After everything she’s been through, Aloukika has one piece of advice for other patients at Children’s Colorado.
“There’s nothing to be scared of,” says Aloukika. “They have everything under control.”