Simple Terms to Talk about Ally and SMA

Simple Terms to Talk about Ally and SMA (Spinal Muscular Atrophy) (updated by Mom 9-20-15)

• Ally is not sick, her muscles just are not able to get strong (and we use our muscles for lots and lots of things including walking, moving our hands, talking…). She has SMA (Spinal Muscular Atrophy).  She was born that way, just like people are born with brown, blue or black eyes, Ally was born with weak muscles. You cannot catch SMA from Ally.

•  Ally’s muscles are weak, but her brain and heart are strong. She is very smart and understands everything you say, she is learning school things like other kids, and LOVES making friends.  She is not able to walk and so she really likes when healthy friends come near her to visit/play/talk with her.  She can get sick easily if someone has a cold or is sick, so friends should only come close to her when they are healthy and ALWAYS wash your hands with hand sanitizer before touching Ally or playing with her.   **Ally loves to play and learn with other kids.  It’s super special when she gets to do school projects, and things in and out of school with friends.  Maybe one day, you will volunteer or be picked to be Ally’s special helper instead of her working with an adult.**

• Special things about Ally—She LOVES coming to school and being around other kids. She learns a little different than some kids, but is smart and learning to talk with her computer, pictures and her eyes to show us how much she knows.  Ally has two sisters (one in college-Kristyn, and another in sixth grade at Bridge School-Melissa) and two small dogs Cody and Mia.  She LOVES music and movies.  She also likes art projects (especially painting). She likes books and especially ones with CDs that go along with them, or when someone reads to her with extra expression to make it interesting.  Ally loves playing games and learning on a laptod and iPad with the help of others.  She also likes going places like the movies, zoo, walks, and to concerts.  With a special head float, Ally loves swimming and can move her body a lot to dance in the water. Ally teaches us to be brave, have a strong heart, and that we can have friends who are different!

• Powerchair or other chairs/Brace/Spine Surgery— We have lots of different muscles in our legs in order to be able to walk. Ally’s muscles will not get strong enough to walk, but she can sometimes wiggle her legs a little.  She can also move her hands just a little bit.  She is learning to use the tiny bit of muscles she has in her hands to control her power wheelchair.  She LOVES being able to move herself, but needs lots of room and is still learning, so you will mostly see adults controlling Ally’s chair or pushing her in her other types of chairs. Ally also has a special brace to help her sit up straighter and special braces/shoes due to her weak muscles.  Ally went to Cincinnati Children’s Hospital in November 2015 to have surgery to straighten her spine since it curves quite a bit from weak muscles and weaker bones.  Due to a small infection, though, surgery was rescheduled for March 16, 2016.  The surgery will make her more comfortable and help some of the pain she can have from sitting in her powerchair for so long. She shouldn’t have to wear her brace after surgery since her spine will be straighter, but it will take about 2 weeks to recover in the hospital and another 6-8 weeks to recover at home before returning to school.  We hope to maybe facetime with school or do short visits if Ally is able to.

• Talking— Ally uses her eyes, small noises, picture cards and her computer to talk.  Your tongue is a muscle and so her tongue cannot move enough to help her talk with words.  She looks up for “yes” and sometimes makes a happy sound or “uh huh.”  She scrunches her eyebrows, closes or eyes, clicks the corner of her right eye, closes her eyes or sometimes does not respond for “no.”  She can also sometimes make a grumpy noise for no or when she doesn’t like something.  Ally can make choices by gazing at what she wants or the right answer if she is shown things or pictures.  You can even point to several items, one at a time, and she will look up for “yes” when you get to the right one (if she wants to answer you).  Ally has her own computer with a camera at the bottom that reads her eyes.  Ally can operate her computer by controlling the mouse with her eyes and staring at an object to click on it. Her computer is not easy to operate, but she is working hard at it and getting better.  She sometimes uses special little switches that she squeezes to operate her computer and play games on it too.  Not being able to talk with words can be frustrating at times, so Ally will get grumpy once in awhile, but we try to help her and figure out what she wants to tell us and do so she as happy.

• Suction— You use your muscles to swallow, so it is not easy for Ally to swallow her spit or food. At the dentist, they have probably used a suction to get the spit out of your mouth.  That’s what Ally’s suction machine does.  It seems loud at first, but you get used to the noise after awhile.

• Eating—We use muscles in our mouth to chew and swallow, so Ally cannot eat food like you and me. She has a special tube in her tummy that she gets her food through (blended fruits, veggies, special milk, vitamins… and even medicine) goes right into her tummy so she can stay healthy.  Once in awhile, she has small tastes of food and treats like lollipops, twizzlers, chocolate, frosting.  We suction any extra out, so she doesn’t choke or have trouble.  (Not sure if we would ever show a child a G-tube if they were extra curious, or show them on Ally’s doll.  I explain it like the connection on a beach ball to get air in and out).

• Trach/Vent/Cough Assist— Your muscles help you breathe. Ally can breathe some on her own, but her trach in her neck and machines make it easier for her. Ally even has a machine that helps her cough easier.  Two to three times a day, she has a breathing treatment to help her stay healthy.  Her nurses and parents help her with these.  (I can share a trached doll if there was ever any interest and also have a trach book).

• Pulse Ox Monitor—The numbers on the pulse ox machine tell us how Ally is feeling. The first number tells us how her breathing is and the second tells us how hard she is working. The alarm gives us warning if she needs help, but once in awhile it goes off when everything is okay.

• Germs—We all have to be extra careful not to spread germs so we don’t give each other colds or get sick. We have to be extra careful with Ally because she is not able to use her muscles to cough and it takes longer for her to get better.  Please always wash your hands before touching or playing with Ally.  If you have a cold or don’t feel well, wait to play or sit by her another day.  How else can we be careful with germs?  Wash hands often, cover mouth/nose when coughing and sneezing, wash hands after coughing/sneezing, keep your distance if sick. Stay home if you have a fever or vomited.

• Other Important Things – Please do not touch Ally’s machines. She might let you play/talk with her using her computer with a grown up.  Do not touch the computer though without permission from a teacher /adult.

• For grown-ups only (or to share with older kids learning about genetics…) – Spinal Muscular Atrophy is one of the 43 disorders covered by Muscular Dystrophy Association. Both of Ally’s parents are recessive carries of the SMA gene (1 in 40 people are carriers and about 6000 babies are born each year with SMA).  Ally has two healthy sisters who may be carriers, but do not have SMA, and most families do not even know they are carriers until they have a child.  When diagnosed, many families are given a life expectancy of less than 1-2 years old due to respiratory complications of type 1 SMA (the most severe and what Ally has).  There are many children in their late teens who continue to beat the odds of type 1 SMA by being aggressive with respiratory care and nutrition.  We have high hopes for Ally’s future and live each day to its fullest.  Please do not hesitate to ask questions, as our family is very open.  Ally also has a blog site that is angelally.com