Tag Archives: Cerebral Palsy
One thing most people probably don’t know about me is that I’m a huge Lady Gaga fan. Growing up with cerebral palsy, I hit a point when I realized that I was “different” from other people. Even if no one told me directly, I always felt like an outcast. In school, I was in all mainstream classes and tried my hardest to prove myself. Needless to say, I graduated high school in 2012 with a cumulative GPA of about 3.2. It was my way to say “I told you so” and reject pity.
Another thing most people don’t know is that I also went through times of doubt where I would let pity get the best of me. I would often pray to God, sobbing, and saying, Why did you make me this way? Why am I here? What is my purpose?
Then one night, a breakthrough. The sobs stopped. I was physically incapable of crying. I truly believe God answered my prayers that night. As started to learn more about the world’s biggest pop star, I felt closer to her than one would imagine even though we hadn’t ever met (yet!)
As soon as I found out that Lady Gaga’s Born This Way Ball tour was coming to St. Paul, I knew I had to get tickets. I was determined to see one of my personal role models in the flesh. In December, I decided to write an e-mail to her management on impulse asking about a possible meet and greet, thinking nothing of it. They probably get hundreds of e-mails a day, I thought. I’ll never get a reply.
Lo and behold, on February 4th, two days before the concert, I got an e-mail saying that a documentary was being filmed about Lady Gaga’s Born This Way Foundation and they thought that I was a perfect candidate. You know those crazy, awesome dreams that you always wake up from before the really good part happens? I thought this was some kind of crazy dream; a prank. Regardless, we corresponded back and forth through e-mail and Trevor, a man who heads up the production team, stated that they wanted to come out to my house for filming.
During the interview, they asked about my life story and struggles. I spilled my guts. I thought I looked horrible on camera, but they said I was great. After the nearly two hour interview, they stated that we needed to be to the Xcel Energy Center at about 3:30 so that they could film us around Lady Gaga’s Born Brave Bus/Tailgate – a place for her fans to go to get help with various issues in addition to meeting other fans in a fun and safe environment. The camera crews said we could do whatever we wanted, so my friends and I just walked (or in my case, rolled) around a bit until they said it was time to go inside of the actual Born Brave Bus for filming.
Before we knew it, screams erupted. Gaga! Gaga! Gaga! The Lady herself walked in to greet both myself and my friend Brandon. We hugged, and she asked us how we were, to which I simply said “I am awesome right now.”
It was at that point that I wanted to cut to the chase and tell Gaga about the absolutely incredible work that Gillette does for thousands of kids just like myself. For months, I thought about the amazing impact that even local sports players have created by spreading the CurePity movement. I wanted to take it to a whole new level, and the wheels in my head were always spinning – Lady Gaga would be the perfect person for this CurePity pledge. I need to get it to her somehow. Which is exactly what I did.
I proceeded to say something along the lines of “Gaga, I don’t know if it’s too much work, but there’s something I’d like to tell you about. The hospital that I go to – Gillette – treats kids just like me from all over the world right here in St. Paul. They also have a campaign called CurePity, which basically means rejecting pity for those with disabilities and empower them instead.”
I then brought CurePity.org up on my phone. Lady Gaga couldn’t sign it right then and there, but she did completely support the movement as well as the hospital’s work. She then said something like:
When most fans come to me, all they want to know is about me, or my music. But all you want me to do is sign this. I think that’s so beautiful and inspiring. When people see this, I think it will have the potential to empower a lot of people and change people’s lives.
Lady Gaga is completely genuine and hands down one of the nicest people ever. Not only that, but she gave me a shout out during her song “Born This Way” – more specifically with the lyrics, “no matter if life’s disabilities/left you outcast bullied or teased/rejoice and love yourself today/cause baby you were Born This Way.” In addition to the two hours we spent before the show, we also got to go backstage after where we spent another hour with her. It was one of the coolest experiences of my life, and making her aware of Gillette’s incredible work was just icing on the cake!
Unfortunately for Miss Gaga, she had to cancel her tour as a result of a hip injury and subsequent surgery. She called me personally last night and said, “Hi Emma! This is Gaga. I just wanted to call you and tell you that I really screwed up my hip after a show. I’m on crutches and occasionally in a wheelchair right now, but I’m doing okay. Thank you so much for making me brave and be sure to tell your friends that I love them. I want to see you again as soon as possible!”
I also asked Gaga personally about the follow up interview – it’s still on as soon as she can make it!
Dear Gillette Team,
We are thrilled to share what our son, Leo, has achieved in the past year. It is almost one year ago (March 28, 2012) since we traveled from the United Kingdom to Minnesota for Leo’s selective dorsal rhizotomy surgery. He is now walking independently indoors and we are totally thrilled about it!
The last year was, and still is, very intense. Leo has been doing physiotherapy five times per week with professional therapists. In addition, he is swimming, riding horses, bike riding and going to kindergarten.
Outside of therapy we took, and still take, every chance to make him work his muscles, from taking him swimming to Croatia, walking around Legoland, Windsor and Disneyland in Paris. He needs to be motivated constantly in order to keep up this intense regimen.
Leo is majorly into Star Wars now. He changed our names to R2-D2 (mom) and Chewbacca (dad). Leo calls himself C3PO and walks around with his light saber, especially when the physiotherapist knocks on the door! It is great to see him walk independently.
The selective dorsal rhizotomy surgery definitely was worth it. Leo is a confident and happy boy. He does not struggle with pain anymore, and his reduced spasticity gives him so much more energy for play, interaction and daily activities. Leo starts school in April and we are sure he will have fun.
Thank you for all your expertise, care, support, trust, knowledge and love.
- Nancy, Marc and Leo Pugliese
At Gillette, we believe our staff members are something special. The compassion and care they provide to our patients is remarkable. In some cases, that compassion grows from a unique understanding of what our families are going through—because many of our employees are also patient families.
Take, for example, Eleesha Hruza, a Gillette nurse. In 2005, Eleesha gave birth to her son, Javier, in Bemidji, Minnesota. When Javier was a month old, he contracted a severe infection and was hospitalized for more than a month.
“Medical professionals told me his outlook was bleak,” says Eleesha. “Very few professionals believed Javier would even survive his first year of life.” He was eventually diagnosed with cerebral palsy, and at 18 months he was referred to Gillette Children’s Specialty Healthcare.
“I had never heard of Gillette, and didn’t know what to expect,” says Eleesha. “When we arrived for our first appointment, I was blown away. I was given a thorough education about Javier’s disability, and was told he would have a happy and healthy future. What a gift for someone to believe in him!”
Over the next year, Javier saw medical specialists at Gillette, and his health dramatically improved. His Gillette medical team took pride in his triumphs and never lost hope. Today Javier is a happy, healthy, 7-year-old first grader.
“The Gillette nurses who cared for Javier inspired me to become a nurse,” says Eleesha. “And now I work at Gillette as a full-time registered nurse, doing my best to help other children the way those nurses helped Javier.”
Eleesha adds, “I can say with great conviction that the people who work at Gillette are the most committed and caring group I have ever known. I hold myself to these standards because I want to give each patient and family the kind of care that Javier and I received. I’m asking people to support this wonderful hospital because I know on a very personal level the importance of the work we do.”
Like many students starting high school, Riley Taborda wanted to try something new. His choice this fall ultimately sprang from an old interest—video games.
Video games led him to marching band?
“I was drawn to this style of music because it’s upbeat,” explains Riley, 15. “And the music and coordination of moves were a lot like the music and quadrants in the video games I play.”
Marching band was new for Riley, as was percussion. He began playing cello in fourth grade, then took up trumpet and, most recently, tuba. Trumpet and tuba weren’t feasible in marching band, because Riley uses crutches to walk as a result of cerebral palsy. Instead, he stood in place to play the tam-tam (a type of gong), triangle, tambourine and suspended cymbal.
The marching band practiced five days a week before school and Monday nights. “The biggest challenges for me were getting up for early morning practices, learning how to stop and start the percussion instruments—and learning how not to drop the mallets while I’m playing,” Riley says. He rides a golf cart to his place on the field but stands throughout performances and competitions. “Just like the rest of the band,” he notes. “I want people to treat me the same as anyone else. I tell them that CP doesn’t stand for cerebral palsy. It stands for Cool Person’s Disease.”
Riley says he enjoys having the band create patterns behind him—but his favorite parts of marching band have involved camaraderie as much as music. “Band camp at the beginning of summer is one of the most fun things,” he says. “So are the bus rides to different competitions—and, of course, the people.” The band did well in competition this year, winning the Wildcat Classic in Omaha, Neb., placing third in New Brighton, Minn., and coming in second in Marshall, Minn.
Although the marching band’s season ended in October, Riley continues to play in the school band. He played tuba at a recent concert and will perform trumpet in jazz band and at pep fests. Cello is on hold for now because it conflicted with other classes. “There’s not enough time to do it all,” he says. “But I want to start up on it again next year.”
Outside of music, Riley participates in Boy Scouts and is a member of Special Olympics teams in softball, basketball, and track and field. He goes to physical therapy regularly to help strengthen his balance and endurance. He’s also undergone multiple orthopedic surgeries, muscle-lengthening procedures, and selective dorsal rhizotomy surgery at Gillette.
“All the surgeries have helped me walk better,” he says. “I hope that pretty soon I won’t need to use my crutches anymore.”
For Elizabeth Brechtel and her 5-year-old daughter Naomi, the start of Naomi’s kindergarten year brought excitement, anticipation—and a little anxiety. That’s because Naomi has spina bifida, a complex condition that causes partial paralysis, hydrocephalus and other complications.
As Naomi prepared to enter Somerset Heights Elementary, Elizabeth knew her daughter’s engaging personality would aid her transition. But some questions still remained. How would classmates react to Naomi’s differences? How would Naomi handle their questions? Would she fit in?
Similar questions had entered Melissa Zeleny’s mind four years earlier when her daughter Hayden, 8, started school. In the fall of her kindergarten year, Hayden, who has cerebral palsy, came to Gillette for a series of multi-level orthopedic surgeries. After a two week hospital stay, Hayden returned to school — first using a wheelchair, then a walker. She repeated the process a year later.
“As an inpatient at Gillette, Hayden was used to seeing many children in wheelchairs, walkers and braces, and using assistive technology,” recalls Melissa. “But at Somerset, she noticed she was the only child who used these things.”
Hayden, today a third-grader, first met Naomi several years ago—she’s in the same grade as Naomi’s older brother, Xavier. As the girls’ mothers connected and began comparing experiences and stories, they soon learned both girls came to Gillette for treatment.
This year, Hayden had an opportunity to participate in Somerset Heights Elementary’s Big Buddy program, which arranges for an older child to serve as role model to a younger peer. And she knew exactly the student to mentor! She asked Principal Mary Bowman to arrange for her to be Naomi’s Big Buddy, and Bowman happily agreed.
“From taking a little longer to get around school, to falling down more easily, and most importantly, wearing braces, Hayden is thrilled to have a buddy who is ‘just like her,’” says Melissa. An added bonus? The girls have become fast friends.
Emily Davis is an energetic and bright 11-year-old with many talents, including knitting, karaoke, and writing poetry on her computer. She’s also fiercely courageous, the result of tackling a lifetime of medical challenges caused by cerebral palsy. Since coming to Gillette, however, treatments and therapies have enabled Emily to thrive. Her biggest accomplishment? Emily can walk independently, something other doctors once deemed impossible.
This fall, Emily will represent Gillette – and Minnesota – in the Children’s Miracle Network Champions program. The program raises awareness of Children’s Miracle Network hospitals, like Gillette, and recognizes children, like Emily, who’ve triumphed over medical struggles. As Gillette’s Champion child, Emily and her family will travel to Washington, D.C. and Walt Disney World with families representing our other 49 states. Her trip is just weeks away!
Yesterday, we held the first of two send-off celebrations for Emily and her family at the ACE Hardware nearest to Emily’s home. Why celebrate at a hardware store, you ask? Because Children’s Miracle Network sponsor ACE is generously sponsoring the 2011 Champions program – including the fun-filled trip. Our friends at ACE sent Emily off in style, complete with cupcakes and a bag of $1 bills to spend during her trip. But Emily was most excited about a gift card that she’ll use to purchase paint for her bedroom. Her color of choice: HOT PINK!