Child of the Month – Meet Gavin

With Orange County Bike Camp just around the corner, we wanted to shine our spotlight on Gavin who attended camp last year.
Gavin was diagnosed with autism at three years old and was told at age five that he would most likely never read or write. His parents, Lisa and Rob, encouraged Gavin to reach for those milestones with endless amounts love and support. Today, Gavin is 11 years old is reading and writing on his own. But that was not the only milestone that Gavin was determined to reach. Gavin’s father, Rob is an avid bicyclist and Gavin wished he would be able to ride a bike independently and alongside his father one day.
At five, Gavin successfully learned how to ride a tricycle and eventually was able to ride a bike with training wheels as well. But for Gavin, the ultimate goal was to ride a two-wheeled bike on his own, without training wheels.
Lisa and Rob heard about Orange County Bike Camp through a friend of the family and decided to look into the opportunity for Gavin. By the end of camp he was riding his very own two wheeled bike independently, with no training wheels. Lisa explains, “That special Wednesday at camp when my husband and I looked up and saw Gavin riding a bike on his own was in the top 5 best moments of my life! To see the beaming smile on his face and the pride that he had, while knowing how hard he had worked to achieve this goal was unreal.”
The family now enjoys daily bike rides and Gavin even gets to ride his bike to school. It is an honor to collaborate with the Down Syndrome Association of Orange County (DSAOC) and to be a part of the Orange County Bike Camp. Congratulations, Gavin and we cannot wait to see what goal you accomplish next!
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UCP-OC Life Without Limits Gala

United Cerebral Palsy of Orange County (UCP-OC) raised an estimated $450K at their annual Life Without Limits fundraising gala on April 22 at the Balboa Bay Resort in Newport Beach. Over 310 attendees helped to honor Dr. Jennifer Simpson and Hoag Memorial Hospital Presbyterian while raising funds for 5,639 local children and families affected by cerebral palsy, autism, Down syndrome and developmental delays. Event co-chairs were Jim Corbett, philanthropist, Kim Letch, Ernst & Young, LLP and Laura Meier, Meier Law Firm.

Guests were greeted by UCP-OC’s child ambassadors and families as they arrived at the black-tie event with a circus theme. An elegant silent auction and cocktail party was followed by dinner, live auction and awards program. UCP-OC’s CEO Deborah Levy and emcee/auctioneer Jim Nye welcomed guests into the main ballroom where the ‘Greatest Show on Earth’ theme continued in the main ballroom with a dramatic silk aerialist performance. Several luxury live auction packages were auctioned and the fund-a-need raised an additional $73,900.

Dr. Jennifer Simpson received the Individual Impact Award to a standing ovation. As Professor of Ophthalmology at the Gavin Herbert Eye Institute, University of California, Irvine and a practicing pediatric ophthalmologist, Dr. Simpson has served as a member of UCP-OC’s Pediatric Medical Advisory Board since 2010 and has a longstanding collaborative relationship with the organization.

Marcy Brown, Vice President, Hoag Hospital Irvine and Ambulatory Services accepted the Community Impact Award on behalf of Hoag Memorial Hospital Presbyterian. Hoag has long supported UCP-OC as they serve families of infants who require highly specialized care through their level III neonatal intensive care unit (NICU). Hoag’s relationship with UCP-OC ensures that NICU discharged infants and their families have access to necessary follow-up care from infancy through young adulthood.

The event concluded with dancing to the live music of The California Band and major event sponsors included David E.I. Pyott Foundation, Argyros Family Foundation, Horowitz Group and loanDepot.

For more information about the gala or UCP-OC, call 949.333.6401 or visit http://www.ucp-oc.org/gala. Click the links below to watch our honoree videos!

Individual Impact Honoree – Dr. Jennifer Simpson

Community Impact Honoree – Hoag Memorial Hospital Presbyterian

Life Without Limits Gala Album

Volunteer Spotlight – Meet Helen!

We are lucky to have some of the most amazing volunteers here at UCP-OC. Meet Helen!

How did you find/start with UCP-OC?

I live in Irvine and noticed the “Life Without Limits” building while giving my younger brother rides. The compelling name caused me to google it when I got home and discovered it was a therapy center. I had been looking to volunteer with children and learn more about different types of services and found this would be a great place.

What is your favorite memory at UCP-OC? 

Probably every time I see the little participants of Talk, Play, Learn Group having a blast.

What have you learned from volunteering at UCP-OC? 

I have gained insight into the interdisciplinary approaches to treatment, observed how learning is facilitated through functional play, and discovered a variety of equipment and stimuli that work to target different sensory and motor skills.

What advice would you have to give to new volunteers, or folks who are interested in volunteering with UCP-OC?

It may be overwhelming at first but don’t be afraid to ask questions– the therapists are kind and willing to help. Be open to immerse yourself in more than one type of therapy because it’s cool to see how they all work in different ways to build upon a child’s progress.  I highly recommend volunteering with UCP-OC!

National Cerebral Palsy Awareness Month

At 6 months old, Justin and his parents received some difficult news. It was then that Justin was diagnosed with cerebral palsy (CP), and doctors believed he would have to rely on a brace to walk.

As Justin’s parents heard this news, they felt confused and scared. But Lily, Justin’s mom, explains that Justin has a way of proving people wrong. Not for the sake of proving them wrong, but because he enjoys facing a challenge and overcoming it. In fact, by age two, Justin learned to walk by himself.

His perseverance and positive attitude have attributed to many accomplishments. Most recently, Justin learned how to ride a bicycle. It was challenging, but he did not give up, and because of this Justin can read, ice skate, and now ride a bike! He is becoming more independent with each new accomplishment and we cannot wait to see what he masters next.

For those of you who may not know much about cerebral palsy, it is an incurable disorder of movement, muscle tone or posture. The signs and symptoms vary greatly but it most typically affects muscle tone, movement and motor skills.

Cerebral palsy is one of the most common congenital disorders and there are three types of CP; spastic cerebral palsy, causes stiffness and movement difficulties, athetoid cerebral palsy, leads to involuntary and uncontrolled movements, and ataxic cerebral palsy, causes a problem with balance and depth perception.

Although there is no cure for CP, treatment, therapy, and special equipment can help to provide a higher quality of life. We here at UCP-OC have made it our mission to help provide a Life Without Limits for any and every child we can!

To help make a difference in Justin’s life, or the other kiddos we serve at UCP-OC, click here!

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World Rare Disease Day – Meet Jimena

In honor of World Rare Disease Day, we wanted to shine the spotlight on a little girl named Jimena and share a little about what this day means to not only those who are affected by a rare disease, but also their families, therapists, doctors, and all of us at UCP-OC as well.

World Rare Disease Day is meant to raise awareness and impact change. Though the campaign mainly targets the general public, it also seeks to raise awareness amongst policy makers, public authorities, industry representatives, and anyone interested in rare diseases. This is a day we particularly enjoy recognizing as it is important to note that 50% of rare diseases affect children.

You may have seen Jimena in our 2016 Report to the Community. Jimena is one of the children we so proudly serve and she is affected by the rare diseases, Pulmonary Artesia and CHARGE Syndrome.

Jimena’s parents, Nereyda and Jesus, were filled with excitement when they learned they were pregnant with their first child, a daughter. Five months into their pregnancy, they received crushing news. Their little girl was showing abnormalities in her heart.

“At that time, our dreams about our little girl’s future changed in an instant.”

Nereyda and Jesus anxiously anticipated the birth of their baby girl, who was born at 40 weeks ready to take on the world.

Jimena was diagnosed with Pulomanary Artesia, Congenital Heart Disease, and CHARGE Syndrome, which is a complex genetic syndrome that creates swallowing and breathing problems. Pulmonary Artesia is an extremely rare birth defect of the pulmonary valve, where the valve that lets blood out of the heart to go to the lungs does not form correctly. With the combined challenges of her multiple rare diagnoses, Jimena has quite a fight in front of her.

Nereyda and Jesus found UCP-OC when Jimena was one year old. She has now been receiving In-Home Early Intervention for over eight months. Ana, her UCP-OC Child Development Specialist, has seen Jimena develop and grow at an amazing rate. Nereyda says of Ana, “Despite all of Jimena’s medical equipment, Ana’s dedication, patience, love and encouragement during their sessions is such a learning experience for us as parents and is so exciting to watch.” Jimena’s parents are thrilled to see the progress that she is making, and now that Jimena is crawling everywhere, we here at UCP-OC also cannot wait to see what she accomplishes next!

“I’m grateful that UCP-OC exists to help kids like Jimena reach their developmental goals and live a Life Without Limits, as well as providing parent support and education.” – Nereyda, Jimena’s Mom

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Meet Damaris!

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Damaris, a dynamic four year old, was diagnosed with Down syndrome at birth. From the second she was born, her family knew that her presence would change their lives for the better.

When Liz and Geovanny first found out they were pregnant with their little girl, they could not wait to meet her. Twelve hours after delivery, the doctor came in with a diagnosis of Down syndrome along with a possible heart murmur and eye issues. Liz, a medical assistant, had recognized the facial features and was not shocked by the diagnosis. Geovanny was in denial at first, but ultimately came to terms with the diagnosis, noting that “Damaris is perfect in every way. She makes our family complete.”

Thankfully, Damaris’s heart murmur closed on its own and she did not need to undergo surgery. Each year, Damaris progresses more and more.

“I think to myself, ‘Where would we be without UCP-OC,'” Damaris’s mother, Liz, shared. Now, having been with UCP-OC for almost 3 years, Damaris has reached milestones and accomplished many goals.

Participating in physical, occupational, and speech therapy has helped Damaris to flourish into a tenacious little girl with a sparkling personality. Today, Damaris can walk and her speech is becoming more clear every day. And as for tomorrow, we cannot wait to see what more she accomplishes.

We are so thankful to be able to provide services and programs to Damaris and her family. To help support Damaris and other UCP-OC kiddos, click here!

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Jacoby’s Story

Our lives changed in an instant… We were scared for our son.

One in six children has a developmental disability or delay – children like our son, Jacoby, who has cerebral palsy related to his traumatic brain injury at birth.  We were motivated to do everything we could to give him the best life possible. Once we found UCP-OC, we knew the future was bright for our beautiful boy because of the array of comprehensive services made available to us.

For children with developmental disabilities, the first years of life are crucial to helping them reach their full potential. Your gift to UCP-OC will provide important direct services to children like Jacoby.

Supporters like you have helped our family in so many ways. Over the past four years we have been with UCP-OC, Jacoby has benefited from many services. In-home early intervention helped Jacoby gain receptive language skills and strength. Feeding therapy has allowed him to enjoy mealtime and have his G-tube removed. Through physical therapy, he is working on taking his first steps. We believe UCP-OC is the place our son will learn to walk.

Your generosity also gives us, as parents, access to the help, knowledge, and support we need to care for our son. The amazing therapists and caregivers at UCP-OC are a valued partner to every parent of a child with special needs.

Services for children with disabilities are expensive, but critical to each child’s future and ability to be an active member of our community. But they are not possible without support from donors like you. Your gift truly changes the lives of children in our community who have disabilities like cerebral palsy, autism spectrum disorder, and other developmental challenges.

Your gift will give children like Jacoby the chance to learn to walk, communicate, and gain independence, and parents like us much-needed support and guidance. We are one of more than 4,300 children and families  receiving critical, life-changing care from   UCP-OC. Your contribution will help provide more than 100,000 hours of direct service in 2017 to families like ours. But we need your help before December 31 to meet the growing need for UCP-OC’s services in the coming year.

A Life Without Limits to our family means Jacoby can reach his full potential, despite having a disability.  We are grateful for donations that provide the resources to help our son gain the skills he needs to do this. Use your envelope and give today!

Sincerely,

Lisa and Nick Gonchar, Jacoby’s Parents

P.S. Please give your most generous contribution of $25, $100, $250 or more today to help kids like Jacoby live a Life Without Limits!

Click here to donate today!

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Child of the Month – Meet Lukas!

There’s no better way to introduce you to Lukas than with the words of his mother. Read below to hear about Lukas’s extraordinary life and his fierce bravery.
“Lukas was diagnosed with a stroke in the right side of his brain at 5 months of age, but the stroke most likely happened when he was much younger. His stroke has resulted in left-sided weakness and motor deficits. For example, the right side of his brain controls the left side of his body, and has ultimately resulted in him having a diagnosis of left-sided hemiplegic cerebral palsy. To add to his challenges, his optic nerve in his left eye did not develop and he is completely blind in that eye; this is an obstacle that most kids with his form of hemiplegia don’t have to face. In essence, he is living with very limited awareness of the left side of his body,” explains his mom, Chelsea.
For those of us at UCP-OC that have had the pleasure of meeting Lukas and his family, we cannot begin to explain the amount of joy that Lukas brings when he enters a room. Lukas has faced many challenges but with every challenge he meets he brings along his undying courage and determination.
As Chelsea continues, “Kids with hemiplegia, like so many kids with other disabilities, often struggle with the things we take for granted every day like walking, tying shoes, talking, reading, balance and he is effected by seizures. We are working hard to change this for him. The brain has an amazing capacity to change its wiring and with targeted therapies we hope that we will be able to help him not only to recognize, but to utilize his left half of his body more efficiently in the future. UCP-OC has played a critical role in helping us achieve his goals and work toward new ones.”
We have no doubt that Lukas will continue to achieve his goals! Thank you to all our UCP-OC supporters for giving us the opportunity to work with Lukas and help him to reach milestones.
If you are interested in ways to get involved with UCP-OC, click here.
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Child of the Month – Meet Aurora!

Sweet, funny, and oh so adorable. When you meet Aurora for the first time, you know you won’t forget her. Her loving personality matches her kind spirit and she has a knack for comedy! Aurora brings so much happiness to her family and as the oldest child, is a wonderful role model for her baby sister.

Aurora’s parents, Marilu and Jesus, were told their baby girl has Down syndrome on the day she was born. As Marilu explains it, “It was a big surprise that we were not prepared for, but we learned about her diagnosis as much as we could. Aurora was born very healthy, no heart problems or any other health issues.”

Today, Aurora is almost two years old and her charismatic personality shines. She has been receiving services from UCP-OC since she was 3 months old. Currently, she is involved in the Early Intervention program and is reaching goals and milestones. With help from UCP-OC, Aurora can now use sign language to communicate when she wants “more.” This was a huge moment for their family and it has improved their quality of communication. Now, her family knows she likes something when she signs “more!”

Marilu shares that UCP-OC has greatly impacted their lives, “Because they have helped us to see that everything is possible. I had many concerns when I first found out about my daughter’s diagnosis, thinking that she would not be able to do things as typical children can. But with the help of Ana, our Child Development Specialist, we learned how to help her learn by stimulating her and doing different activities that help her reach milestones.”

Here at UCP-OC, we have no doubt that as happy, independent, and courageous Aurora grows, she will continue to reach milestones and attain her goals. We are so lucky to be able to provide these services for Aurora and her family and we consider it an honor to help them provide a Life Without Limits for their baby girl. If you are interested in supporting Aurora and other UCP-OC kiddos, click here to donate or get involved!

 

Child of the Month – Meet Ryleigh!

We had the pleasure of sitting down with Kamronn, the mother of 2-year-old UCP-OC kiddo, Ryleigh. Kamronn first brought Ryleight to UCP-OC about a year ago and the moment you meet these two you can tell they have a most special bond. There is no one better to tell Ryleigh’s story than her mom, so read on to find out more about this dynamic duo.

How long have you been involved with UCP-OC? We have been involved with UCP-OC for about a year. We started with physical therapy and just recently began speech therapy as well.

That’s great! Has UCP-OC impacted your life? UCP-OC has been such a great addition to what I do with Ryleigh on a daily basis. It’s brought so much extra support to our family. It’s really like a support group for the families.

We’re so happy to hear that! Speaking of the daily basis, what are some of Ryleigh’s favorite things? Ryleigh loves pretend play, baby dolls, music, dancing, books and gymnastics. She can have fun doing just about anything!

Before we hear more about Ryleigh’s story, can you share an important milestone or memory? A milestone I’ll never forget was the first time Ryleigh’s therapist saw her walking on her own. Hearing and seeing the excitement on their faces and knowing it was the same that I had when I saw it for the first time. The feel of family that the UCP-OC therapists all bring is remarkable and knowing they are as proud of her as I am is overwhelming.

Kamronn, can you give us some background on Ryleigh and her story? My sweet Ryleigh was born at 37 weeks. She had her own agenda coming into the world after only 30 minutes of labor. I knew my life had changed the moment I held her and she held onto my finger. We left at 2 days ready to conquer the world. Little did I know that at just 6 days old she would be diagnosed with Down syndrome, it’s a day I will never forget.  Diagnosis or not, I knew I was lucky to have her and that life with my daughter would be amazing. I also knew our story had just begun. Then, at 3 weeks old, we found out she had a heart murmur and her cardiologist later confirmed she did in fact have a hole in her heart. As a single mother, I was overwhelmed by the feelings and rush of emotions. But, I looked to my mom and she told me what I already knew, that everything was going to be okay. She said, “We’ve got this; our little girl is a fighter, a rock star.” Later on we met with the cardiologist and spoke about her condition. Learning she had VSD, or Ventricular Septal Defect, which is most commonly found in children. I now had to choose to surgically have the hole closed or wait to see if it would close on its own. It was a huge decision to make but I decided to do the surgery. Since she was only 5 pounds we had to wait until she was 5 months old in hopes she would double her weight. As the time got closer, the feelings got more surreal. On the day of her surgery the hours felt like days but our little girl was a fighter, and she left that surgery as a champion! She did great and was released from the hospital 4 days later. I knew from that day on she would conquer the world. Fast forward to now and she is still everyone’s Rock Star! The minute she walks into a room she fills it with laughter and joy. She is excelling in all milestones and is passing “typical” children in goals. In fact, other moms ask me for tips because they are so impressed with Ryleigh! As a mom, it makes me so proud to see how she rises above challenges and her perceived “limits.”

Thank you so much for sharing your and Ryleigh’s story. Is there anything else you would like to share with our readers? I would love to tell any parent that you are not alone. That a diagnosis doesn’t define who your child is and will be. No matter what they set their heart and mind to, remember that they can achieve it. We are their voice, supporter, and cheerleader. So, it is our duty to believe in them. I feel that our purpose in life is to bring awareness; to let people know that no matter what diagnosis is written on a piece of paper, you should never judge a book by its cover. Our children can and will do amazing things. Give them all the opportunities possible, help build their confidence and help them live their dreams. My daughter is my hero, strength and courage, my reason for everything. She is my world and, most importantly, my best friend. I’m more proud of her today than yesterday, but not as much as tomorrow. She has taught me more in her 2 years than I have learned in my whole life. I thank God everyday that she chose me to be her mommy. So, be proud and don’t let a diagnosis bring you down. These days, months, and years will be the best time of our lives. Remember not to set limits, instead keep opening doors for them to succeed. They need opportunities, not limits.

**Kamronn has created a team for STEPtember in honor of Ryleigh. To help them reach their fundraising goal, click here to donate to their team!