Dear NSW families,
We hope you’ve all had a wonderful summer break. We’re excited to see returning families in the East Wing and are looking forward to meeting new West Wing families. Those of you who know Liv know that she had an amazing experience at NSW last year. For those of you who don’t know her, we want to give you a short introduction.
Liv’s favorite appointments at NSW are the communication center and the mini studio. She loved writing letters to her Dad and worked on a book for several weeks that included pictures of her and her school friends. Outside of school, Liv loves playing and spending time with her family, especially her big brothers Miles and Baron. If she could live in the pool, she would. She settles for as much swimming as possible and loves all things that do get to live in water, especially octopi. She is also obsessed with Darth Vader and the Lion King and one of the highlights of our summer was meeting the cast and getting a backstage tour before seeing the Lion King musical in New York. Liv initially is a quiet observer but then she’ll tell you exactly what she wants and how she feels. She has a silly (and sassy) streak too and will try to make you laugh often.
Kids like Liv are rare and might provoke questions from your children. Liv has a rare muscle disease called Nemaline Myopathy. It affects all of her skeletal muscles (muscles the body uses for movement) and is most severe in the face, neck and limbs. Liv cannot crawl or walk independently and wears leg braces to give her legs more strength. Liv attends school with her companion, Allie, who helps her move around school. Your curious children may ask questions about Liv’s braces and why she holds Allie’s hands or uses a walker when walking. We tell them that Liv was born with muscles that weren’t very strong and the braces help her move around better and she’s learning to balance on her own. Liv also has a feeding tube and although she eats her food by mouth, she uses her tube for liquids and medicine. When children ask what it is, we tell them that Liv is practicing drinking and while she’s getting stronger, the tube lets us put water right into her tummy. It doesn’t hurt her at all.
Liv can also sometimes be difficult to understand (since you use so many skeletal muscles to talk) but if you ask her to repeat herself or speak slower, you can usually understand her. Her brain isn’t affected by her disease and she’s a bright, curious, engaged little girl. She is aware that she’s different but wants to do everything her peers are doing and will try to do it in her own way.
We always encourage children (and parents!) to ask as many questions as they have and to please never be frightened of Liv. She has far more in common with her peers than she has differences.
The most serious problem with Nemaline Myopathy is that it affects the diaphragm – the muscle we use to breathe. Liv cannot cough forcefully enough to keep her lungs clear which means that she’s at risk for severe respiratory complications if she gets sick, which could be life threatening. We have 2 older children in elementary school and are well aware that kids get sick. While we’re asking you to treat Liv like a typical child in every way, the one thing we are asking you to do differently is to consider Liv when deciding whether your child is too sick to go to school. We understand that often you don’t know that your child is sick in the morning, but if you know s/he is sick, or think s/he might be (new runny nose – even if clear, new cough etc.), we hope you will keep them at home.
We are looking forward to another incredible year with you all.