Two year old Macy Brandt is the first Gardner resident to be diagnosed with Rett Syndrome. A fundraiser was recently held for Rett Syndrome, but donations are still needed. Submitted Photo
Special to The Gardner News
Two year old Macy Brandt is the first Gardner resident to be diagnosed with Rett Syndrome. Imagine the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety… all in one little girl. This is Rett Syndrome, a rare genetic mutation affecting brain development in girls.
The U.S. National Library of Medicine says that the condition affects an estimated 1 in 8,500 females. It is rarely inherited, and found in all racial and ethnic groups throughout the world.
It’s unpredictable. It’s rare, but can happen to anyone.
Infants seem healthy during their first 6 to 18 months, but then rapidly lose coordination, speech, and use of the hands.
That’s what happened with Macy.
Like other Rett girls, everything appeared normal during pregnancy and even after birth, through the first months of infancy.
When Macy was 10 months old and couldn’t keep her balance to sit up, her parents, Samantha and Scott Brandt, knew something was wrong and started seeking medical advice.
After visits to many institutions and specialists who had no answers, Macy was eventually diagnosed with Rett Syndrome – by then she was 17 months old.
A genetic test can confirm clinical diagnosis of the disorder, but a pediatric neurologist or developmental pediatrician must order that test.
This is another common experience of Rett girls and their families. It can take a while to get the diagnosis. Families have to endure a period of time where there are no immediate answers.
At first, Macy was only unable to sit up. She didn’t have the other Rett symptoms until she was 18 months old.
“She kept the use of her hands for quite a while. She used to be able to feed herself, she lost that,” said her mom, Samantha Brandt, while feeding Macy in her high chair.
In front of Macy is a small computer screen with software that tracks her eye movement to enable some basic communication. When she wants a bite, she looks at the corresponding onscreen icon, and the computer audibly says “eat.” She looks at another icon that says “drink,” when she wants a drink.
Macy now goes to therapy three days a week at the Lee Ann Britain Infant Development Center in Shawnee.
There’s no cure for Rett Syndrome, but medications, physical and speech therapy, and nutritional support help manage symptoms, prevent complications and improve quality of life.
New drugs now being tested have helped some patients to regain some of their lost abilities, so there’s hope there and hope that continuing research will one day discover a cure.
On average, girls with Rett live into their 40’s and 50’s. Unless a cure is found, they will need special care for their entire lives.
Families of Rett girls here in the mid-west region quickly become aware of each other and develop a bond of support and friendship.
That group includes families from Olathe, Shawnee and Roeland Park in Kansas and from Missouri cities of North KC, Harrisonville and Sedalia.
Families get together, usually at least once a year, when they hold a fundraising event.
This year it was the newest member of the fraternity, Macy’s mom Samantha, who took on the task of organizing the fundraiser.
It was held on June 25 at Red Crow Brewing Company in Spring Hill.
It was a family fun event with games, face painting, DJ, silent auction and more. Brandt says the event was well attended, everyone reported having fun and most importantly, it raised over $10,000.
The families know the best hope lies in continuing research – and that research needs continuous funding.
The big push is the yearly fundraiser, but donations can be made at any time of the year.
This is why increasing public awareness is important.
A lot of people have never heard of Rett Syndrome, but when they do learn about it, many will make donations to fund research.
Samantha Brandt found that out while seeking business sponsors for her fundraising event.
“The businesses around this town have been so generous with their donations and help… I was just blown away by that – the kindness our community showed,” Brandt said, obviously touched by the response.
She said virtually every business she talked to in Gardner was eager to help in some way after learning about what Rett Syndrome is and that a local girl is affected.
In addition to the numerous businesses that donated, the fire district, the police department, the sheriff’s office and Sacred Heart Catholic Church also participated.
The response from the Gardner community shows that when people are aware, they want to help. Awareness can be continued by asking others if they have heard of Rett Syndrome.
Samantha Brandt can be messaged through her Facebook community page called Crowing Purple for Rett (facebook.com/crowingpurpleforrett ).
To learn more about Rett Syndrome, or make donations, please visit rettsyndrome.org.