November 2023 Special Needs Living Magazine

A True 1 In A Million! The Story of Camila Guzman

BY ANDREA HURR • PHOTOS BY JULIAN CURET

Having a child with special needs who appears to look like a “typical” child presents another layer of challenges that many may not think about. In 2021, then almost 4-year-old Camila Guzman was diagnosed with a rare and severe form of epilepsy called Lennox Gastaut Syndrome (LGS). According to lgsfoundation. org, approximately 48,000 children and adults in the United States have LGS and approximately only 1 million people worldwide have this condition. No one is born with LGS - it is a syndrome that develops over time so the diagnosis can be quite a shock. There is also currently no cure. Looking in from the outside though, you would never know by just looking at Camila that she has this. That is actually what can be most terrifying for her and her family. Part of Camila’s treatment is following a strict ketogenic diet to keep the seizures at a minimum. It can be quite challenging, especially now that Camila is in school but they have seen great success from it so far. Part of the challenge is that because she appears to not have any issues there is always a risk of someone offering her a sugary treat as a reward. Anything out of her approved diet can actually cause havoc on her little body. Although great care is used to notify all staff in Camila’s care, there have been times when someone not so familiar with her case has offered up a non-approved snack or treat and this can cause a hospital stay and weeks of rearranging her medicines to get her back to a more “normal” state. It is also impossible to expect a child to be able to turn down a food/drink that she cannot have because she’s just that, a child. So even though Camila knows she can’t accept just anything from people, the Guzmans can’t expect her to always follow through on that, especially if a peer is just sharing and trying to be a nice friend. Because of this, mom Alix, says that “it is so appreciated when anyone stops to ask if my child has any allergies, etc. before offering anything to eat! It can be difficult for many to understand how specific her diet is and is often easy for Camila to blend in as a typical kid and her special needs can go unnoticed.”

Camila is now a fun-loving 6-yearold attending kindergarten in Green who participates in dance. She and her family have had their share of scares and struggles as they adjust to life with this syndrome. Camila was a typically developing child up to her diagnosis and this catapulted her parents, Alix and Mario, into a world of doctors, hospital visits, invasive tests, medications, and gaining knowledge on treatments and care. Camila requires numerous medications daily along with meds administered by G-Tube and her

ketogenic diet to keep seizure activity under as much control as they can. Alix says they have received exceptional care at Akron Children’s Hospital and they are so grateful, especially to all the doctors and nurses and the neurology department. They also have to monitor her while she is sleeping because a lot of seizure activity can take place at sleepy time and there are risks of falling out of bed, etc. They often come up with some creative ways to share the bed with her to be close in case of this activity. Although all of this is relatively new for them, they have a tribe on their side, especially some friends who have children with special needs as well, that they can relate to, share with, and have to comfort and inspire each other. “Having a child with a medical condition like Camila’s has at times been very stressful and very scary. We are so grateful to have found successful treatments to control her seizures. With some of our darkest days behind us, we now remember to be grateful for so many small things. Getting through holidays with no trips to the hospital and participating in “normal” activities with Camila that we missed so much of in 2021 are so special to us now. I remember days of not knowing how I could keep doing this, but always told myself to put one foot in front of the other and keep fighting. We are so thankful for where we are now!” says Alix.

It just goes to show you that you never know the battles that someone may be fighting and when it comes to children they are all special and unique no matter how they may appear. Spreading awareness to treat everyone with kindness and always ask a parent or caregiver before offering up any treats is not just in