MONROE — When it came time for Darcy Richardson to start school as a first-grader at Abraham Lincoln Elementary School in Monroe, her mother, Vicki, stayed by her side to make sure all went smoothly. 

Her mind was eased quickly when during inside recess a little boy immediately engaged with her, and helped Darcy accessorize a Mr. Potato Head to her liking. 

“The kids are just so accepting and amazing — they’re willing to help her,” Vicki said. “They want to be with her.”

The staff also connected quickly with Darcy, and after overcoming several obstacles in her life, she now loves to be at school and around people.

“They’re shining examples of good people,” Vicki said of the staff and students at Abe. “The teachers see Darcy as a blessing and a way to teach kids about diversity. Darcy is easy to like.”

At 2 and a half, Darcy was diagnosed with Rett’s Syndrome, a rare genetic neurological disorder that leads to severe impairments that affect nearly every aspect of her life. She is non-verbal, has no purposeful use of her hands and, although she can walk, spends a lot of time in a wheelchair. 

The 7-year-old seemingly attracts people, Vicki said, in part because of her differences. And the students don’t hold back with their questions — something Vicki encourages. 

“Kids are the best,” she said. “They’re so straight forward.”

Darcy is surrounded by a strong community and support system, which makes hard days easier for both of them, Vicki said. 

“Once you meet her, you just love her,” Vicki said of her daughter. “She’s great. She’s very loving and very affectionate.”

‘Wish Week’

Recently Brodhead High School jumped on board to show support for Darcy when student council members held a “Wish Week” fundraiser. The group raised more than $4,000 to help send Darcy on a trip through the Make-A-Wish Foundation, a nonprofit organization that creates wishes for minors with a critical illness. They sold t-shirts, held a “Miracle Minute” and shot contests during the high school band concert, girls and boys basketball games and held penny wars and other events all week. 

Vicki has known that her daughter was eligible for a Make-A-Wish for years, but wanted to wait to do something special that Darcy could choose. 

At the end of September, Darcy will be almost 8-years-old when they take their trip to Disney World in Orlando, Florida, and Vicki said she knows her daughter will fall in love with the lights, colors, music and dancing. Darcy loves the movies “Frozen” and “Coco” — and is getting into more “girly” things as she gets older. 

“This is a once in a lifetime opportunity for her,” she said. “I think she deserves the world — and what’s better than Disney? I can’t think of a kid that deserves it more. She works so hard every day. Every day is a fight for her. It’s not easy being Darcy.”

Darcy is adored among her peers, but she faced challenges early in life.  She has been in several therapies since age 3 and has undergone testing and surgeries that most people won’t see in their lifetime. 

When they learned Brodhead decided to help with the Make-A-Wish fundraiser, Vicki said they were surprised and thankful. Monroe also showed support in solidarity for Darcy this year, having the entire school dress in purple. 

It’s the little things that make it easy to see the lives that Darcy has touched. 

“She’s a blessing. I do everything for her because I’m happy she’s here,” Vicki said. “I cannot even begin to imagine what she’s gone through. If I can make her life better — that makes my life better.”

Diagnosed

Vicki experienced a normal pregnancy and Darcy was a happy, healthy infant. However, as time went on, she noticed that things were off and her daughter wasn’t hitting big milestones. 

After seeing several specialists, a neurologist noticed Darcy, then 2 and a half, was ringing her hands, which led them to test her for Rett’s Syndrome. 

“I’d never heard of it,” Vicki said of the disorder. “I didn’t know what it was.”

Vicki went against the doctor’s suggestion and began doing research online.  

“I was devastated. It was like losing my child,” Vicki said. “You go through a grieving process. I got some help. I’m not perfect — but I’m OK. She’s got it a lot harder than I do.”

On the other side of devastation, Vicki also found peace in finally knowing what her daughter had.

“I had an answer,” she said. “We had a way to go forward — no more guessing games.”

Moving forward meant hours of research to get help for Darcy. After age 2, she began a typical process for people with Rett’s Syndrome and regressed. At one time, she could say “mama” “dada” and “baba” but she is no longer verbal. She also stopped chewing around that age and now has a feeding tube. 

The best course of action for Darcy was finding a way for her to communicate her needs, staying mobile and addressing other medical concerns. That meant a long waiting list to get into specialists and the runaround of insurance approval. 

“Being a special needs parent is hard because of all the time waiting,” she said. 

But her persistence paid off — Darcy now has a communication device, a computer that tracks her eye movement and speaks for her which helps teachers, caregivers and her family understand her needs and even her personality.

“She’s sassy,” Vicki said with a smile. “I love that about her.”

The future

Rett’s Syndrome is a disease that progresses slowly throughout life and shortens lifespan. Both Vicki and Darcy have good days and bad, but for the most part, Vicki said she stays positive about her daughter’s outlook for the future. 

“She’s almost always happy and that makes it easy,” Vicki said. “She’s got a great community.”

Although Vicki doesn’t have a lot of family nearby, she receives strong support from them and her boyfriend, Kevin Field, and his family. Darcy’s father, William Richardson, also takes part in her life. 

Vicki said they connect with other families who have children with Rett’s through social media and through the research foundation. It’s the wonderful people in Darcy’s daily life that bring her joy — including the caring aides at school and a caregiver she adores. 

Darcy shows compassion and empathy in her own ways, and often cries when another child is crying. Despite her obstacles, she has found ways to connect with other students and make true friendships.

“Darcy has quite the following,” Vicki said. “She’s very popular — you can’t help but love her.”

Vicki is from the Verona/Richland Center area but has lived in Blanchardville, Brodhead and now Monroe for years. She works at Ekum Abstract & Title. For more information on the Make a Wish program, email Kelsey Rice, community outreach coordinator, at krice@wisconsin.wish.org.