October is Rett Syndrome Awareness Month, but what is Rett? Most people have never heard of it unless someone they love is diagnosed through a genetic test.

That’s what happened to our family when my beautiful granddaughter, Leah, was diagnosed three and a half years ago.

Once diagnosed, we like everyone else who discovers this for the first time, began to conduct extensive research. Here’s what I’ve learned and want to share with you.

First, Rett doesn’t care about whether you’re poor or rich, white or brown, or any other factors. It can show up anytime, in any baby that was born with this condition. There’s no warning, no prevention and no guarantees.

Kids with Rett Syndrome may have problems with communication, but they are hearing everything and are intellectually spot on with everyone else.

This genetic condition, which is not hereditary, can start off with a healthy baby, meeting all their milestones, eating well, smiling, even talking. Then for no reason, they stop progressing, and may even go backwards in their abilities.

There are different variations, as each child with Rett is unique. Each journey with a child with Rett is specific to them. 

Generally speaking, people with Rett Syndrome may have digestive issues, cognitive difficulties, lose their ability to speak and may experience different degrees of muscle weakness. They might also be very sensitive to drugs and vaccines, and some have issues with their heart and breathing. 

There is no cure for Rett. Instead, we treat the symptoms by prayer, diet, vitamins and minerals, special herbs, exercise, which is very important to strengthen their muscles, medical intervention, if necessary, and therapy.

There is good news!

Acadia Pharmaceuticals has submitted a new drug application to the FDA for trofinetide to help with a new treatment for Rett Syndrome. 

The International Rett Syndrome Foundation – an organization which provides support and regular news updates and seminars – is now enrolling a new study to help unlock treatments and cures for Rett. 

I have attended several seminars, and I have learned that kids with Rett Syndrome may have problems with communication, but they are hearing everything and are intellectually spot on with everyone else. They are full of personality and a sense of humor. We are careful what we say around my granddaughter because she understands everything.

I’m hoping that anyone reading this understands that kids with Rett Syndrome are smart, fun and have so much to give to this world. 

Communication is a huge issue and can be addressed with a really cool computer that people with Rett can use with their hands if they are able, or even their eyes.

This computer has a screen that offers many pictures with short phrases for Leah to choose from like, “I’m cold” or “I’m hungry,” “I love you,” “I have to potty”, and so on. These computers open a whole new world for these kids and build a critical bridge of understanding for each other. 

The classes also talked about diet and constipation which goes with the low muscle tone in some kids with Rett. Fiber is very important for them. They also discussed how their brain sees the world around them and how to help them navigate with this perspective.

I’ve only touched on some key points, but the important point is to be aware. This fosters healing because it encourages more research and support. 

I was also concerned that some children may be misdiagnosed with Autism or other medical conditions when they might have Rett instead.

Rett has some similar symptoms to some types of autism, but the therapies, medical interventions and diets may be different depending on the child, and it’s actually a completely separate medical condition, so the correct diagnosis is important. 

I’m hoping that anyone reading this understands that kids with Rett Syndrome are smart, fun and have so much to give to this world. 

Leah is an absolute joy and everyone who hangs out with her, loves her. 

If you google Rett, you may find some very sad information. Keep in mind that this is relatively new and not all that we find on the internet applies to every person and every circumstance.

I receive the IRSF magazines and it’s full of kids and adults living their lives with Rett Syndrome. Some are struggling where others are doing great and living each day to the fullest.

Our job is to see each person as the wonderful individual that they are.

The views expressed here are those of the author.

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