Dear NSW families,

It was wonderful meeting everyone at New Parent Night. We are really excited to join the NSW community. Sadly for us, we’ll miss the Family Pages Night and wanted to introduce our daughter, Liv, to you. Liv will be joining Cynthia’s Lily group in the West Wing. 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. Liv initially is a quiet observer but then she’ll tell you exactly what she wants and how she feels. She also loves listening to music (especially musicals with Grandpa), reading books and watching people dance. 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. On her playdates at NSW, several curious children asked questions about her braces and why she was holding my hands when walking. I told 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. 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 say it 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 an incredible year with you all.

Warmly,
Sharon and Boris Shimanovsky