Like many 11-year-old girls, Brooklyn Nichols is a happy sixth grader at East Limestone and a straight A student. She is thriving and looking forward to being involved in different clubs at her school. Next week, she will travel with her family to Walt Disney World. She has accomplished many things, including co-authoring a children’s book, despite some doctors not expecting her to live past her third birthday.

Brooklyn’s mother Keanna Nichols and cousin Denise Smithers sat down to talk about her journey with a rare disease that, until recent years, had no treatment.

“Brooklyn was born in 2011 and we noticed, as time went on, that she was not progressing. She wasn’t standing, like, if you put a baby on your legs and bounce them up and down, her legs would just go like noodles,” Keanna said.

As Brooklyn kept missing expected milestones, Brooklyn’s pediatricians tried to reassure her parents. Sometime around Brooklyn’s first birthday, they decided to have their daughter undergo testing to determine if there was a problem. A week after her first birthday, she was diagnosed with Spinal Muscular Atrophy (SMA) Type 2.

SMA is a rare and progressive neuromuscular disease and the leading genetic culprit of infant mortality. It causes difficulty with functions such as breathing, swallowing, and walking.

“We received that devastating news. At the time, there were no treatments available. We were sent to a specialist in Nashville, and at the time, we really did not receive good information. We were told she would probably not make it past the age of three,” Keanna said.

Brooklyn would see her specialist every six months, and Keanna described the family as “just going through the motions.” It was suggested to the family that they join the Muscular Dystrophy Association. After doing so, Brooklyn was sent to Children’s of Birmingham for treatment since the family lives in Alabama.

“That was a huge blessing for us. We were able to get a team. We would go to the MDA clinic there, and we were able to have in a one stop shop: pulmonary care, neurologist, rehab medicine … just a team of people who brought new resources. It truly just turned our world right side up.”

Brooklyn had access to all the equipment she needed and a new treatment that was available. It kept her from being hospitalized as much. but the treatment did require a spinal injection every three months. Brooklyn hated the treatment, according to her mom.

“Thankfully, what a blessing, another medication came out — Evrysdi. We started that in late 2020. That has just done wonders for her. She doesn’t have to go into the hospital. It’s just a daily medication she can take via g-tube or mouth every day, and she can stay right here at home,” Keanna said. “Brooklyn is a typical 11-year-old girl. She likes to be around people; we travel. She just wants to have a good time, and she wants her family to be all around. We are getting ready to go to Disney, and we’ve been doing things all throughout the holidays. My main focus with her is I don’t want her to focus on her disability. I want her to focus on what we can do.”

Keanna gives credit to the medication, the therapists, and equipment for vastly improving Brooklyn’s quality of life.

“She is able to sit in her wheelchair. She is able to sit independently, and she has been doing so for years. It’s an array of things that we use, and I think that they all give her the ability to have that little bit of independence,” Keanna said. “The key is early diagnosis. It’s part of the newborn screening in many states. I would certainly recommend, if it’s not a part of it, that they get that. They can start treatment so early now. There are so many SMA patients that are able to walk that wouldn’t be able to walk because they are able to get on these early medications that are out there now.”

Family is extremely important to the Nichols family. Their motto is “Faith, family, and fun.” Once a year, Brooklyn stays with extended family to give her mom and dad a chance to take a short vacation together, and during last year’s trip, Brooklyn was bored and missing her parents. She reached out to Keanna’s cousin Denise.

Denise said, “Brooklyn and I are best best friends/surrogate mommy-daughter type situation. She is so funny, witty, loves family, wise beyond her years, empathetic — everything rolled into one. She, at that time, she was the typical 10-year-old girl and missed her parents. Brooklyn and I talked everyday.”

Knowing Brooklyn was missing her mom and dad, Denise suggested they find a project to make the time go by faster.

“She asked me, ‘What would you do if you had nothing to do?’ That was the a-ha moment, the spark. I said, ‘Brooklyn, I think you are onto something,’” Denise said.

Denise suggested they write a book talking about what to do when you have nothing to do. The book is titled “A Do Nothing Day: What would you do if you had nothing to do?”

“We brainstormed cute little phrases and what they could do. It turned into a message of inspiration and hope. The message is for everybody. Although you might not be able to walk or have the same physical functions that somebody else might have, you still have all of these great things you can do,” Denise said.

The book features children with varying abilities, including Brooklyn, on the cover. To date, the book has sold 500 copies simply by word of mouth. For a copy of the book, email robertnkeanna@icloud.com. A second book is due out in spring 2023.

Keanna said, “The ending of the book, which I love, is ‘You only have one.’ We live each day as if it could be our last, and we just have a good time while we can.”

Brooklyn proved her first doctors wrong and is now looking ahead to a bright future. She has many hopes and dreams, including possibly being a doctor, an artist, or a chef.

“Her latest to me this past week and a half is that she may go off to school at Auburn. Part of her other dreams is she wants to go to Italy, because she loves pasta. She thinks she needs to go there to have pasta. At the old age of 11, we talk about boys a lot, unfortunately. We are always talking about boyfriends and trying to prepare me for that,” Keanna said.

Denise added, “I can’t find one word to sum up Brooklyn, Everybody loves her. You forget and don’t really notice her disability because she is so full of life and she always has something so super profound to say. Brooklyn just has a natural ability to make everything better. She has a gift of bringing people together. As for her dreams, she is very clear that she is going to be rich, live in a big house, and all her family is going to live there.”

For more information on Brooklyn’s treatment for SMA, visit https://evrysdi.com/.