When Elena started 4th grade this year, she was nervous. She was starting at a new school and didn’t know anyone in her class. She was filled with regular kid worries. Worries such as- will anyone sit by me at lunch? Will my teacher be nice? Will I make friends? Am I going to read as well as my peers? As her mother, Lindsay, found comfort in these fears because they were typical 4th grade concerns.    

As the beginning of school neared, Elena’s worries shifted. What if the kids won’t play with me at recess because I can’t run as fast? What if they make fun of me because I have a trach? Will they laugh because I have to have a nurse? Why can’t I ride the bus with my identical twin sister?    

Although she doesn’t have much time left as an elementary school student, school feels like it has only just begun for Elena. In her nine short years, she has spent nearly five hundred days in four different Intensive Care Units, in three different states. Her longest consecutive ICU admission was 228 days! She has been resuscitated countless times, over-dosed on drugs, had her bones broken in the hospital…but she continued to fight! In the past year alone, she spent eight weeks away from home because of hospitalizations or Intensive Pulmonary Rehabilitation. Last year, in addition to an Intensive Care admission and surgery, she had roughly 140 medical appointments either at home or in a clinical setting (surgeon, pulmonologist, cardiologist, endocrinologist, pediatrician, orthopedic specialist, orthotist, ophthalmologist, palliative care team, chiropractor, physical therapist, speech therapist, occupational therapist, music therapist).    

Elena was born with only one lung and a collapsed airway. She has a tracheostomy and is hooked up to a ventilator for anywhere from 12-24 hours per day, depending on her respiratory status. Every morning, in addition to getting her snack and homework ready for school, Elena must wear a special vest (2x per day for 30 minutes each time) that helps shake her respiratory secretions loose. Her time before school is spent either doing breathing treatments, therapy, or visiting her chiropractor to help alleviate pain in her back/shoulder. After school, she is exhausted, but she always tries to sneak in a few hours of playtime with her sisters before her evening medical obligations consume her.    

At birth, Elena’s esophagus was not connected to her stomach, and neither were her intestines. It took years before her esophageal repair was complete. It was a courageous battle that nearly took her life on many occasions. She loves to eat (her favorite foods are popcorn, BBQ chips, and shrimp), but her intake by mouth is not nearly enough to sustain life. She is connected to a feeding pump roughly 18 hours per day. Her mom makes her food in a blender, so she is able to “eat” all of the same foods as her family.    

In the past year, in addition to having to move into a house that is not modified to fit her needs, she also went through many difficult medical changes. She spent the past year battling illness after illness, and her overall endurance has suffered. Elena and her family moved into a smaller home and are trying to make room for her new hospital bed and added therapy equipment (her therapy has been doubled for the first time in her life). They have left behind her Make-A-Wish sunroom that allowed her to sit outside, bug-free, in the shade with a ceiling fan on even the hottest of days when breathing becomes an enormous challenge.    

There are more changes to come. In the next month, she will be receiving a back brace for her scoliosis. She has also been fitted for a power chair to allow her to save her strength while getting from Point A to Point B, and offer her some much needed independence when she is on her ventilator. In a couple of months, Elena will be mostly homebound for the duration of flu season, while her sisters are off at school. None of these changes are easy for Elena, but she lives her life with grace and beauty and continues to persevere through even the toughest of times.   

While her medical conditions certainly occupy a great deal of her time, Elena and her family do their very best not to let them define who they are. Because Elena has spent a large portion of her life either homebound or in the hospital, they cherish each moment that they are able to spend that is “normal.” After spending years in a hospital setting, they celebrate even the smallest of victories such as skinned knees (regular childhood wounds that aren’t surgical in nature!), grass-stained jeans, and muddy shoes. 

Elena’s favorite past time is listening to music and going to concerts. Music therapy has truly been life-saving. She adores going on road trips with her sisters, Evie and Vanessa, and her mom, Lindsay. Despite having to pack an entire mini Intensive Care Unit for each road trip, they are always up for adventure when Elena’s respiratory conditions allow. The family motto is why spend so much time fighting to live, if you can’t actually live, right??    

Elena lights up a room. Her bright light shines through any circumstance, and her happiness is infectious. This child finds beauty in everything, and always has a reason to dance (whether there is music playing or not). Sometimes the smallest of stars shine the brightest!        

We are hosting a fundraiser to help ease some of the financial demands that coincide with having a medically fragile child. Caring for Elena is a full-time job- one in which Lindsay takes great pride, but is in definite need of help after nine years of struggling. We want to help Lindsay make modifications to their new home to make it safer for Elena. We are also hoping to give them the opportunity to live a little bit more of a normal life, without all of the financial strain.    

Please help us show this family how much they are loved!  

SOMETIMES THE SMALLEST STAR SHINES THE BRIGHTEST!