The $4,000 goal was set to pay for the expenses of renovating the family garage into a more accessible room for Courtney. With frequent trips to the hospital and the potential for emergency exit situations, the larger room would be a safer route in and out of the home without disrupting Courtney’s fragile immune system.

“We wish somebody could have matched our donation totals but the party was wonderful and we are grateful to those who came out to support Courtney,” said Linda Rosas, Courtney’s grandmother, who, along with Courtney’s mother, is her primary caregiver.

The South Houston Volunteer Fire Department was one of those supporters on hand at Courtney’s party, having adopted the local red-headed princess for various South Houston events, such as serving as grand marshal of the city’s annual parade.

“We’re here to protect and serve and this little girl just took our hearts,” said firefighter Daniel Olivo.

Courtney’s escort and dance partner for the party was 5-year-old Hayron Merida of Houston, who is also afflicted with SMA.

Hayron’s father was moved by the community support in both South Houston and Pasadena displayed for Courtney and her family.

“To see all this attention revolving around Courtney and Hayron fills me with hope and a determination to push forward and do what is best for our children,” said Manual Merida.

While Spinal Muscular Atrophy limits physical movement, it does not affect brain activity.

Dawne Sweet, Courtney’s occupational therapist, has seen up close the level of determination and intelligence at work.

Courtney can operate left- and right-hand switches to perform tasks and is particularly proud of her homemade cupcakes.

“She always tries really hard and tries to do her best and use her hands and loves to be independent in things that she can do,” said Sweet. “She’s an all-around fantastic little girl, very strong and willful.”

The SoHo fire fighters at Sunday’s party all expressed a feeling of protectiveness toward Courtney.

“We try to do everything we can for her,” said Olivo. “This is five years of miracle life for her and just being here for her today means so much that you just can’t put it in words.”

While friends and guests filled the dance floor throughout the afternoon, Courtney, in a pink and white formal, pink wrist corsage and sparkling tiara, and Hayron, in full tux, reigned supreme under the disco ball as their song, “My Girl,” played.

“Watching them dance together — this is just very emotional for us,” said Merida.

For more information on helping Courtney build her new room, contact Linda Rosas at 713-946-2457 or 281-795-8272 or visit www.our-sma-angels.com and www.fsma.org and to learn how to help find a cure for Spinal Muscular Atrophy.
 

That willful, determined and defiant nature may be a clue to how Courtney continues to prove the doctors wrong.

“They told us that she probably wouldn’t last until 1 and definitely not to age 2,” said her grandmother. “After her second birthday, we realized that we had a shot at a future.”

Courtney, the family princess, is about to host her fifth birthday and is ready for a larger venue.

The Rosas family is inviting the public to join them for Courtney’s Fifth Miracle Birthday Celebration on April 13 in the Austin Ballroom at 2222 Spencer Highway in Pasadena. Dinner, music, dancing, a raffle and various prizes will be part of the celebration with the goal to build a fund that would enable the Rosas’ to renovate the family garage into a larger room for Courtney.

The room will be wheelchair-accessible and make overall access easier, with the walls, beams and roof requiring major renovation.

That accessibility would make Courtney’s frequent trips back and forth to the hospital less cumbersome and precarious, and would also serve as a security backdrop in case of any emergency.

“She doesn’t have a fire escape right now and there is no way to get her out,” said her grandmother.

Courtney has actually celebrated more birthdays than most 5 year olds.

“She’s worn a lot of birthday hats because that first year, we had birthdays for her every single month because we wanted to get in as many birthdays as we could,” said her grandmother. “She’s our miracle child.”

When Courtney was diagnosed with SMA, her young mother was devastated.

Instead of losing hope, she chose to educate herself about the disease and to fight for her daughter’s quality of life.

Candace left school early to dedicate her life to Courtney and never looks back.

“My thoughts were, no matter what, she’s my daughter and this is how God gave her to me so I have to accept it,” she said. “This is how I’m going to take care of her and this is going to be my way of life and how it’s going to be.”

Candace and her mother have become Courtney’s source of life, each one alternating their time with her, monitoring the breathing machines that measure her vital signs.

For them, it isn’t about sacrifice, but a matter of life and hope.

“We have not given up,” said Candace. “People always say that she’s blessed to have me, but I’m blessed to have her. I don’t know what other people think because I’m in a box. This is normal to me, this is my life. I think of her as an angel and God is too busy so he needs help. I feel like I’m a chosen one.”

SMA is presently categorized as terminal, but Courtney is too busy living every day - getting ready for her party, learning to dance with best friend Hayron, who also has SMA, and playing her triangle.

Her mother and grandmother are too busy accepting every day as a gift and a miracle.

“I won’t stop fighting,” said Candace.

Courtney’s music is just one of the ways she can communicate, and it never stops until she’s ready.

For more information on Courtney’s fifth birthday party, call Linda Rosas at 713-946-2457 and 281-795-8272 or visit www.our-sma-angels.com/CournteyBrooke to learn how to contribute to finding a cure for SMA.