Clare Julian is a 7.5-year-old who lives in Timberlake with her mom, dad, older brother Liam, and older sister Regan. She is in second grade at Royalview Elementary and plays baseball for Miracle League Park. Clare enjoys playing with her two dogs, Fonzie and Creed, and chasing her brother and sister around the house in her powerchair. She also enjoys video games and playing on her iPad. Clare represented Cleveland Clinic Children’s Family Advocacy Day in Washington D.C. when she was two years old. When she grows up, Clare wants to be a teacher and a mommy. She and her family have been part of the A Special Wish family since she was five months old.
Clare was born with a neuromuscular condition called Nemaline Myopathy. NM is rare – it occurs in 1 in every 50,000 people. We had never heard of this condition before her diagnosis at four months old. NM affects all her muscles, giving her a “floppy” tone. It especially affects the muscles in her face, neck, and trunk. Because of the lack of muscle strength, Clare needs help to do basic human functions, including breathing, eating, talking, and walking. She has a tracheostomy tube and is connected to a ventilator around the clock. She lacks the strength and coordination to swallow so she receives all her nutrients through a feeding tube. Clare cannot walk so she relies on us, her caregivers, to get from place to place when her wheelchair isn’t conducive. She is non-verbal and Clare cannot close her mouth, so for those who may not be familiar with her voice, she uses sign language and a communication device to communicate. She cannot manage her secretions, so we suction her mouth and trach often throughout the day and night. Clare’s health relies on someone overseeing her care every second of every day.
Even with all these challenges, Clare is so much more than her condition:
She is funny – dinner time is filled with laughter and it’s usually because of her antics.
She is smart – cognitively Clare tests higher than other child in her age group and learns very quickly.
She is inclusive – Clare will not let anyone feel left out.
She is strong – what she lacks in muscle strength she makes up for in determination and courage.
She is amazing – Clare is a blessing to all who have the pleasure to meet her.