LEWISBURG, W.Va. (WVDN) – Statistics indicate that approximately 10,000 babies born each year will develop cerebral palsy, and one Greenbrier County family is working to raise awareness.
Londyn Phillips has cerebral palsy and epilepsy, but that does not stop her from being a fabulous, spirited and loving little girl. Her mother, Desiree Phillips, said she brings so much joy and light to their lives.
With March being Cerebral Palsy Awareness Month, Desiree Phillips hopes to raise awareness by sharing their day-to-day routines on Facebook and telling her story. It is easy to use terms like, “inspirational” and “heart-warming,” when talking about someone who deals with lifelong diagnoses such as cerebral palsy. However, there is so much more to be said. While families dealing with CP are inspirational, they are more than what just a few words can describe.
According to Desiree Phillips, Londyn was a surprise, later-in-life baby. The pregnancy was not an easy one, with Desiree Phillips experiencing complications. Even so, she said Londyn had remained healthy in utero until around 34 weeks, when she stopped moving. Desiree Phillips was rushed to the hospital for an emergency caesarean section, after which Londyn spent about three weeks in the NICU.
Fairly quickly, Desiree Phillips said she noticed small things, like Londyn did not make eye contact and kept her head to the left quite often. Additionally, the infant struggled to eat and gain weight.
Desiree Phillips said, “She was so tiny and just could not eat.” Her mother’s intuition kicked in. “I knew in my heart something wasn’t right.”
Several doctor appointments later, they still did not have a “why.” One day, Londyn went an extended amount of time without being able to eat and not having a wet diaper. Desiree Phillips took her to the emergency room, where she was eventually sent to another hospital. There, Londyn received a feeding tube and was diagnosed with “failure to thrive” at only four months old.
Fast forward to Londyn being eight months old and a new doctor confirming Phillips’ suspicion that she could have cerebral palsy. From there, they received a referral to a neurologist who officially issued the diagnosis. At the same time, they found out that Londyn had a stroke either in utero or directly after birth. Due to the brain damage, little Londyn also has epilepsy. She is nonverbal and non-ambulatory.
Despite the numerous adversities the young girl faces, she is an emotive, sweet child living her best life.
Because many people have never been around someone with cerebral palsy, there is a fair amount of curiosity and stigma associated with those who have CP. Desiree Phillips said she wishes people felt more comfortable asking questions. She said she and Londyn often get curious stares when out and about, especially when using the feeding tube.
“I feel like people should be comfortable to ask, like, “Hey,’ what’s up? What’s happened? Is that food?’
“’She has a feeding tube,’ I would love to explain. I mean, I feel like awareness is so important, not only for Londyn, but also for everybody. If there was more awareness, there would be so much more kindness and acceptance, and things to help these kids progress in life.”
Phillips also wants people to know that while Londyn is nonverbal, it does not affect her ability to understand the world around her. She is quite social, as well. “Most kids like her are,” Desiree Phillips said.
For parents who may have just heard the diagnosis of cerebral palsy, Phillips said, “It’s OK to cry.” Hearing the diagnosis may be scary, and it is OK to take a moment to experience that grieving process.
“It’s going to be OK; you’ll make it; and your child is going to be the best gift you can ever imagine.”
“It’s OK to be in that grief for a little bit, because it is a grieving process. I know that might sound ugly, and you know, it really is hard when you’re going through that initial shock and processing and everything from the diagnosis. You breathe, you grieve, especially when they’re diagnosed young, and she was a healthy pregnancy. There wasn’t anything genetic or anything like that. But you grieve for what you thought your child would be. You grieve the fact that they’re not going to walk, because we were told before she was one that she would never walk. You just grieve the life you thought you would have, the life you thought your child would have. It’s a process, and I think it’s OK to go through that. If you need help, reach out.”
Phillips runs a Facebook page called Loving Londyn, where she shares their journey. If anyone wants to reach out for support, Phillips said she encourages them to message the page. She also shares information about cerebral palsy and epilepsy.
Londyn’s story is both unique and akin to others who are on a similar journey. Follow her Facebook page to learn more.
