Team Carter and STEPtember Fun!

This, like most, is the summer of Superhero movies. With that in mind, we wanted to share the story of a family at UCP-OC that very much resembles a family of Superheroes.

Enter two of the protagonists – Melissa and Brian, the parents of two adorable little boys. The oldest of which, is Carter, a happy and loving three and a half year old. On the outside looking in, the family shares many typical day to day activities as their sons spend time playing with toy cars, trucks and balls while listening to ‘The Wheels on the Bus.’ But as Melissa explains it, “We are real life Superheroes, because every day we manage situations that a ‘regular’ family may think impossible.”

This part of their extraordinary life began in March of 2013. It was around then that Brian and Melissa noticed that Carter had missed several developmental milestones early on. Later in 2015, as they walked into their official appointment with their Neurologist to discuss Carter, the concerned parents understood that an impending Cerebral Palsy diagnosis was likely. Even so, when the Neurologist did diagnose Carter with Ataxic Cerebral Palsy, it was an emotional moment. Melissa and Brian thought, “Will he be able to stand or walk independently? Will we be able to provide our beautiful son with everything and anything he may need?”

Met in the face of adversity, Melissa and Brian put their worries aside and focused all their energy on providing a happy and fulfilling Life Without Limits for Carter. His parents found out about UCP-OC and soon Carter, whose biggest struggles are independent mobility and communication, began Physical, Occupational and Speech therapy regularly. Carter has now officially been in therapy for two years and the family is “overjoyed with how incredibly far he has come,” said Melissa.

When Melissa and Brian think about what life lessons Carter has taught them, they show no hesitation as they explain that Carter, “Changed our lives for the better. His diagnosis opened our eyes to a world we never knew and a journey we never expected would be our own. But through this journey he opened our hearts to so much more.”

It was just last year that Melissa and Brian heard about STEPtember through UCP-OC. With a son that is so truly inspiring to them, they decided to start a Team Carter and participate in STEPtember for the first time. Now, with what we know about this incredible family, it is not hard to believe that their team (again, in their FIRST year of participation), walked a total of 670,576 steps and raised $3,351.00. All in only 28 days. Carter inspires their whole family everyday and Melissa and Brian said that they, “wanted to make a difference, raise awareness and support a great cause. We hoped to remind others that we all take many things for granted, walking is definitely one of those things.”

Lastly, of course, the parents gave credit to their son who shows them that with a tenacious and positive attitude, it is always possible to live a Life Without Limits!

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UCP-OC Respite Team Member Named Miss Huntington Beach OC Ambassador for 2017

We are proud to announce that our very own Respite Recruiter, Alexandria Marshall, was recently crowned Miss Huntington Beach OC Ambassador 2017. In this role, Alexandria will promote something that is close to her heart – serving as an advocate for children with special needs.

Alexandria, who will celebrate her two year anniversary with UCP-OC this month, was just promoted to the position of Respite Recruiter. The Respite and Childcare programs provide skilled pediatric caregivers to assist special needs children and their parents at no charge. These services and many others are tied to UCP-OC’s mission to help children with disabilities reach their full potential, improve the quality of life for their families and foster an attitude of acceptance and inclusion.

At just twenty-four years old, Alexandria is a passionate special needs advocate that she says began by having a sister with Down syndrome. Throughout her life, Alexandria has supported her sister Courtney through variety of activities that serve kids and adults with special needs including summer camps, dances and the Special Olympics.

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Hand-picked for the position of Miss Huntington Beach OC Ambassador, Alexandria was chosen among 12 applicants and cites her advocacy of children and families with disabilities and work at UCP-OC as key to her selection. Her designated platform during her term as Miss Huntington Beach OC Ambassador will be to raise awareness for individuals with special needs. And to this end, she aims to tie-in the work of UCP-OC.

Alex explains, “I wouldn’t be who I am today if it weren’t for my sister, Courtney. She has taught me to appreciate the small things in life and never take anything for granted. She has been my biggest and most devoted fan through my pageant journey!”

A lifelong resident of Huntington Beach, Alex is a 2014 graduate of Texas Christian University (Cum Laude) where she received her B.A. in Musical Theater Performance. The multi-talented 24 year-old loves to sing, dance and perform. On Sundays, you can find her singing with her church praise band.

Her future dream is starting a nonprofit theater or camp for kids and adults with disabilities. In the meantime, she is working hard for UCP-OC and looking forward to what next year holds in her new role as Miss Huntington Beach OC Ambassador 2017.

 

Child of the Month – Meet Chloe!

It is hard not to notice the infectious personality of Chloe, the middle daughter of Peter and Crissie. Chloe is a sweet, quiet, fun loving girl who greatly enjoys learning and being independent. At birth, Chloe was diagnosed with Down syndrome and she had a few obstacles to overcome. She was born with strabismus which is a misalignment of the eyes, chronic ear infections that caused perforation on both ears, speech apraxia which is a motor speech disorder that leads to problems saying sounds, syllables, and words, and she also struggled with sleep apnea which is a common disorder in which you have one or more pauses in breathing or shallow breaths while asleep. But once you get to know Chloe, you will realize there is nothing she can not do.

At age 14, Chloe is already quite accomplished. Her mother explains, “There have definitely been challenges and painful times, but it doesn’t compare to the joy she brings to our lives. Our life is more fulfilling because of her. We celebrate every milestone and look forward to what lies ahead.”

Chloe and her family have been with UCP-OC for almost 2 years now and she is currently receiving physical, occupational, and speech therapy. According to Peter and Crissie, Chloe’s favorite day at UCP-OC is Wednesday when she takes her favorite class, Fit Kids. 

Before discovering UCP-OC, they were receiving services elsewhere and the environment was not as friendly as the family had hoped. Crissie says, “I love everyone here at UCP-OC because everyone does a great job of promoting a friendly, positive, and enjoyable place for kids and parents. It’s a different atmosphere. It’s a joy seeing Chloe running into the building excited and ready to work.”

Crissie and Peter know that Chloe’s least favorite activity is physical exercise, so they found it strange that Chloe is always so excited to attend Fit Kids class. Because of this class, her parents share, Chloe has gotten much stronger and has learned a great deal as well. Outside of UCP-OC, Chloe loves to go to park and play on the swings. If she’s not at the park, you’ll find her swimming, bowling, and being a typical teen playing on her iPad and listening to music.

Congratulations on all you have overcome, Chloe! We here at UCP-OC, are inspired by your drive and motivation to learn and grow. We cannot wait to see what milestone you reach next. Thank you, Chloe, for being the true definition of a Life Without Limits. 

 

Chloe and friends

 

Click here to show your support of Chloe and UCP-OC by making a donation today!

STEP Up for UCP-OC!

This year, UCP-OC will again be participating in the international STEPtember campaign. We all know how fast the summer months fly by, so, it’s time to start planning for STEPtember! For those of you who have questions or are interested in participating, please read below and spread the word! Thank you so much for taking the time to view our blog.

What is STEPtember?

Promoting a Life Without Limits, UCP’s STEPtember challenges participants to take 10,000 steps or do any other kind of physical activity every day from September 1 through 28 to raise funds for those living with Cerebral Palsy and other disabilities. With your help, and the support of your friends, family, colleagues and community, STEPtember can help change the lives of people living with disabilities.

What is our purpose?

Every dollar raised during STEPtember allows United Cerebral Palsy to provide much- needed services and care for the many children and adults living with disabilities, as well as their families and caregivers. Through the sponsorship of those who participate, their friends, family and colleagues, we will successfully raise the vital funds needed to help pay for equipment, therapy and support for persons with disabilities.

Who can participate?

Any person wanting to make a positive impact on the lives of people with disabilities can be a part of the STEPtember movement. From those living with disabilities, to their families, caregivers or loved ones, and even those who just want to dedicate 28 days to giving back to their community, this challenge is open to anyone and everyone!

How can you get involved?

Those looking to participate in STEPtember can do so by gathering a team of up to four people and registering online, and the sooner the better! Starting on September 1, team members can use our online tracker to record their daily steps and activities. The goal for each member of your team is to take the equivalent of 10,000 steps every day doing physical activities. Make every move count by asking friends, colleagues and family members to sponsor your efforts through online donations or by holding your own local fundraiser.

Spotlight: Jayden and Leah

When Manda and Owen welcomed twins Jayden and Leah into the world, the family couldn’t have been happier. But, it was a rough 10 days as the girls had to stay in the NICU. After the 10 days were up and the girls were home, Manda and Own started to notice certain milestones not being met.

Jayden wouldn’t smile, laugh or coo but she could stare. Leah wasn’t making noises or making eye contact. So, at 18 months old, Manda took the girls to the doctor who assessed them to be functioning at 0-6 months old. From there, they started ABA (Applied Behavior Analysis), OT (Occupational Therapy) and PT (Physical Therapy). But it wasn’t until the girls needed speech therapy that they found UCP-OC.

When the girls turned 3, the diagnosis of autism became clearer. Jayden started talking at 3 and is now able to communicate with her family and friends. Today, Jayden is on the higher functioning side of the spectrum. Leah said her first words at 4 and is semi-verbal today. She can mimic words and sentences now which is a great accomplishment!

Their pediatrician referred them to UCP-OC 5 years ago and since coming to UCP-OC the girls have graduated PT and Jayden has finished OT. Now, at 7 years old, the girls remain in speech therapy and they both are making great progress. For Manda and Owen, it’s the small victories that mean so much to them. As Manda explains, “We love going to UCP-OC. The therapists have always been so helpful and understanding. I don’t believe the girls could have reached the level they are at without having been referred to UCP-OC. It was definitely a blessing.”

While the girls have separate strengths and weaknesses, they do a great job balancing each other out. Jayden may have many extreme fears, but she has her sister Leah who, as her mom describes her, is “almost fearless.” At the end of the day, the girls love playing dolls and reading and their parents love to see them be able to communicate.

“To see our girls be able to talk, eat new foods, write words, and climb things is so amazing! We wanted to believe these things would happen and we are so lucky to be able to watch them as they do,” says Manda.

Congratulations to all of the impressive achievements Jayden and Leah. We love to see you living a Life Without Limits!

To support children like Jayden and Leah, click here to donate.

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Autism Awareness… Because It Matters

As Autism Awareness Month comes to a close, we wanted to highlight the story of Matthew, a three-year-old little boy with the kind of personality that spreads happiness and joy to those lucky enough to meet him. 

Before we share Matthew’s beautiful life, here is a little bit of information on autism. Autism is a developmental ailment that involves atypical development and function of the brain. It is characterized by difficulties in social interaction, decreased communication skills, and restricted or repetitive patterns of behaviors. Matthew has been diagnosed with cerebral palsy and autism and he continues to reach for his full potential through hard work and dedication. 

Weighing only 4 pounds and 11 ounces at birth, Matthew spent the first 30 days of his life in the NICU. But, he has proven to be a fighter! At ten months old, Matthew was diagnosed with Cerebral Palsy. About a year after that diagnosis, he lost language skills, but continued to progress in all other areas of development. He also began repetitive behaviors and lost eye contact and socialization. It was shortly after these changes that Matthew was diagnosed with moderate to severe autism.

According to Matthew’s mom, Kristen, “I was lost and without hope until we found out about UCP-OC, where Matthew has been fortunate enough to receive therapies, including physical, occupational, and speech therapy for over a year. During that time, he has flourished, regaining many skills that he lost, and has gained many more. For example, Matthew used to speak many more words before his autism diagnosis, then lost them for a long time, and regained them with the help of his wonderful speech therapist at UCP-OC”.

After many sessions of speech therapy, his speech therapist at UCP-OC enlisted the help of a physical therapist to help Matthew be as independent as possible. Because of this, Matthew now gets to borrow a walker from UCP-OC during his speech therapy and, according to Kristen, Matthew loves it! As Kristen explains, “He would have never had this important experience of trying out a walker that he loved if it were not for the therapists at UCP-OC”.

Since then, Kristen has ordered Matthew the exact same walker to help him get around without having to crawl or using a stroller or wheelchair.

“With Matthew’s complicated global delays and special needs, I have great comfort in knowing that he is receiving the best quality of care and attention I could ever dream of at UCP-OC”, Kristen.

We at UCP-OC are inspired and honored to have the chance to meet children like Matthew and their families. Thanks to your support of UCP-OC, we will be able to serve Matthew on his journey as he continues to reach his full potential!

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iheartoc Giving Day

From 6am on April 27 until noon on April 28, you’ll have 30 hours to give where your heart lives! Support UCP-OC during this time and your donation will go even further to helping kids like Carter live a Life Without Limits, because the Orange County Community Foundation is offering matching funds as well as prizes for participating organization. Visit our page here and make sure to share your support with friends and family.

The Story of Kiaan

Kiaan was a micro preemie, born 15 weeks early. At nine months-old, Kiaan’s parents began to see milestones being missed and brought him to‪#‎UCPOC‬. Hear his remarkable story and how he has made tremendous strides over the years with his family and UCP-OC by his side. Kiaan is the true embodiment of a ‪#‎lifewithoutlimits‬!

Happy National Cerebral Palsy Awareness Day!

Today is Cerebral Palsy Awareness Day, a day that is very important to us here at UCP-OC. UCP-OC was originally founded in 1953 to help people of all ages that are affected by cerebral palsy (CP). UCP-OC now observes a greater demand to serve children with all types of disabilities, and that demand includes CP.

For those who may not know, cerebral palsy is the general term for a number of neurological conditions that affect movement and coordination. Children with CP have difficulties controlling muscles and movements as they grow and develop. Though there is no cure for CP, therapy can help people with CP to become more independent and that is precisely the goal of UCP-OC.

In honor of Cerebral Palsy Awareness Day we would like to highlight the story of three-year-old Carter who was recently diagnosed with CP. Carter began his journey at UCP-OC by receiving physical, occupational, and speech therapy for his previous diagnosis of global developmental delay. Now that his diagnosis has changed to CP, Carter will continue to work with his therapists at UCP-OC and has made great strides and accomplished many goals.

Early on in Carter’s life, his parents Melissa and Brian along with his pediatrician noticed his visual impairment. At four months old, his vision had not improved and he began wearing glasses to correct his vision. Carter also started therapy to help him reach developmental milestones. Having impaired vision led to considerable delays for Carter but his tenacious and positive outlook, along with a bit of hard work, has gotten him far. In fact, Melissa shared that “Carter has made significant strides in all areas of his development with the help of his team at UCP-OC. As a parent, every trip to UCP-OC is my favorite because upon arrival, Carter can hardly contain his excitement because he knows where he is headed. This reaction alone is remarkable for our family.”

Melissa goes on to share that “While typical children are scheduling play dates and other activities, our children’s lives are about therapies. I say children’s because Carter’s little brother Jackson, who is one-year-old, attends every session. We spend a lot of time at UCP-OC and are grateful it is a home away from home for us. The support and love we receive from everyone is amazing. UCP-OC has really given our son a great opportunity to reach a Life Without Limits.”

His therapists Vanessa, Pati, Megan and Ria have seen Carter grow and have celebrated his accomplishments. Because UCP-OC houses multiple disciplines under one roof, Carter will be able to continue working with the therapists that have become like family. The developmental obstacles that Carter will face require hard work but we have no doubt that Carter can accomplish anything he puts his mind to.

To all of our UCP-OC benefactors, thank you for the support you have shown Carter and the 3,800 other children and families that UCP-OC proudly serves. Show your support of Cerebral Palsy Awareness Day, and Carter of course, by making a donation today! http://www.ucp-oc.org/give

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Celebrating World Rare Disease Day

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World Rare Disease Day is annually held on the last day of February in order to bring awareness to the general public, policy makers, health professionals and anyone with an interest in rare diseases. For those affected by a rare disease, this is their day to share their story.

In honor of World Rare Disease Day, we here at UCP-OC would like to share Jayden’s story with you. Jayden was diagnosed with a rare disease at birth and would have a multitude of obstacles to overcome as he grew up. However, Jayden’s story is one of bravery and immense courage, the type of courage that inspires all.

Jayden, now 7 years old, came to UCP-OC 6 years ago after being diagnosed with cri du chat syndrome, pronounced cree-doo-shah, as a newborn. The diagnosis came when Jayden’s parents, Darlene and Leon, grew concerned of their new born baby’s irregular breathing and high-pitched cry. After many tests and seeking additional opinions, a genetics test revealed that Jayden did have cri du chat syndrome.

Cri du chat is a rare genetic disorder that is caused due to a missing part of chromosome 5. The French term refers to the cat-like cry of affected children. Though symptoms of cri du chat vary case by case, doctors explained to Darlene and Leon what they should expect. Receiving news like this as a parent can be very discouraging, but Darlene and Leon fought to provide a better future for Jayden and that fight brought them to UCP-OC.

When Jayden was first referred to UCP-OC for occupational therapy 6 years ago, he was not able to hold his head up or move around on his own. After receiving intensive therapy at UCP-OC, Jayden is now able to walk with the help of his walker. This is an amazing accomplishment, and it is not the only improvement Jayden has made. Just three years ago, Jayden had his gastrostomy tube, which is a feeding tube, removed and began physical therapy at UCP-OC. After a lot of hard work, Jayden is now able to eat on his own.

Jayden had many obstacles to overcome before he came to UCP-OC, and at only 7 years old he has accomplished so much. We have no doubt that Jayden will continue to reach milestones and achieve his goals, and this makes his family and UCP-OC extremely proud!