Over the years, Casey Cares has had the privilege of touching the lives of thousands of critically ill kids thanks to your support. That includes children who have now graduated to the title of "alumni patient" of our programs. While some leave our programs when they turn 18, others depart when they no longer meet the criteria of being diagnosed with a critical illness, experiencing frequent hospitalizations, receiving active treatment, or being on hospice care. Each alumni patient's journey is a testament to their resilience, the support they have received, and the lasting impact that Casey Cares has had on their lives. Read "Little Moments, Lasting Stories" alumni feature with Natalie! Natalie is no longer frequently hospitalized!
Meet Natalie
"When Natalie was born, the doctor knew something wasn't right so he ordered genetic testing. About 3 weeks later, we received the news that Natalie had a rare chromosomal syndrome called Trisomy 9 Mosaicism," Karen, Natalie's mother shares.
Karen remembers that during the first months after becoming a mom to Natalie, she "was a mix of emotions - from scared to sad to upset. But I was also able to find moments of joy in between all of the times I was worried about how I would manage her care and her needs. At the time she was diagnosed, there was very little known about Trisomy 9, so we were kind of on our own when it came to learning about how that syndrome would play out for Natalie's future."
She continues, "Natalie cannot talk or walk; she has a feeding tube and will never be potty-trained, so she wears diapers. Although Natalie is a very happy teenager, she functions at the level of an 18-month-old and always will. She sleeps in a hospital-like crib and must be lifted out of that every morning into her wheelchair. She receives 5 medicines daily for reflux, saliva control, seizures, GERD and bowel issues."
"Natalie's gastric tube (G-tube) was placed in her stomach when she was about 2 weeks old because she can't really eat much by mouth. We hook her up every night to her feeding pump so she can receive Pediasure or Boost formula. But over the years, with feeding therapy, she is now able to eat things like apple sauce and yogurt by mouth during the day. She can only consume about 6 ounces of food daily, so she'll need to fed through her g-tube for the rest of her life in order to sustain any weight," her mother says.
Natalie and her older sister Rachel have an undeniable bond. Her mother states, "Even though Natalie is not able to talk, it’s clear to everyone that she adores Rachel and that Natalie is the light of Rachel’s life. They have their own ‘secret handshake’ and Natalie only likes to ‘wheelchair dance’ with her big sister."
Finding Support With Casey Cares
In 2018, Karen learned about Casey Cares "through a support group at our local children's hospital called 'Chronically Cool Families.'" A few weeks later, she sent in an application for her daughter. Though the mother of two has fond memories of all the activities her family did through Casey Cares, Karen says, "I think the highlights were movie tickets, receiving the Elsa wig that she wore when her older sister played "Anna" in a Frozen musical, and the Disney Jr. musical. Natalie loves to watch characters sing and dance! Rachel has been to the movies with Natalie and has also shared the pizza and PJs nights with her."
Reflecting on her family's time with Casey Cares, Karen's favorite part of the nonprofit has been "the compassion that we know is behind every gift and every activity offered - the staff and generous donors who give these gifts are truly wonderful people."
After Natalie's diagnosis, Karen faced new challenges as well. " Natalie has had numerous surgeries and several ER visits related to respiratory distress. But by far the biggest scare we’ve ever had was when she contracted an infection from a spinal fusion procedure. She was in the PICU for 4 months and we almost lost her. Thankfully, the medical team was able manage the infection and Natalie bounced back. Having a child with medically complex needs is like a roller coaster ride and you just never know when the mountains or valleys are coming. You are stronger than you can imagine. You CAN do this!" she states.
As mother to a child with medically complex needs, Karen has learned to lean on support from other special needs moms and families over the years.
She expresses, "I have met my ‘village’ through my daughter’s school, and her hospital visits. They are my ‘go to’ people not just for resources and answers to some of our medical questions, but they truly understand what it’s like to raise and care for a child who is medically complex and has special needs. Doctors, nurses and therapists are wonderful, but sometimes, only other parents who are walking in your shoes really ‘get’ you and can be there for you through your darkest and happiest moments with your child."
An Alumni
With Natalie now an alumni of Casey Cares, Karen finds this to "mean that we always have an extended family of people who understand our journey, but more importantly, we hope it may also mean that we can now provide emotional or financial support to a family who may be struggling and just may need to lean on someone else for a while."
Going forward, Natalie will be cared for her by her parents, primarily Karen, but during the school day, her needs are tended to by her private duty nurse. She adds, "We are hopeful that as Natalie ages, she will always be able to have a nurse who can help manage her care."
Karen ends with adivce to other Casey Cares families who also have a medically complex child. "Trust your instincts when it comes to your child. Find your voice and help them find theirs when it comes to advocating for their needs. Soak up every moment of joy, no matter how small, because as tough as it can be to raise a child who is medically complex, they tend to bring out the best in everyone and when that happens, it’s magical to witness," she states.
Your support helped bring dozens of fun activities for Natalie when she was a patient in our programs! Help more kids like her here!