UCP-OC 2014 Life Without Limits Gala Video

Recent studies show a staggering statistic that 1 in 6 children in the U.S. will be diagnosed with a developmental disability. UCP-OC proudly serves the 1 in 6 children in our community that make up this statistic.

 

Learn more about the services UCP-OC provides:

Debunking Respite Care Myths – A look into UCP-OC’s Respite Care Program

Did you know that UCP-OC can be your respite care provider?
As a RCOC recognized professional respite agency, UCP-OC currently provides respite care for 330 throughout Orange County. Our 107 respite caregivers have an annual accumulation of 46,273 hours!

What is Respite?
According to the Regional Center OC, the state of California will provide respite care to provide caregivers the occasional relief they need. Respite care is many times provided by a vendor agency (UCP-OC) to give the family a worker with special training that equips them to deal with children or adults with challenging behaviors.

Do you go on date nights? Many times date nights for parents with special needs children seem out of reach. Respite can save marriages by giving parents an opportunity to re-connect on a date night as well as providing childcare support or even time to go grocery shopping! It provides relief by pairing a trained, adult caregiver with their child.  With their UCP-OC caregiver, children are able to pursue activities outside the home in addition to having a safer and more enriched experience when their parent is away.

3 Common Myths and Misconceptions:

Myth: Respite is only provided in the home setting
Truth: We are able to transport into the community, take to therapy, attend recreational classes, pick up and take to school (exceptional cases)

Myth: Respite is only if you need it.
Truth: Respite should be used regardless of need, and should be used because a parent/caregiver wants a break from care giving of someone with special needs. Regional Center should offer every consumer; the number of hours/ share of cost is individualized (Medicaid waiver is an option and should be discussed with families.

Myth: Respite is just for general relief.
Truth: There are a variety of ways Regional Center can issue a respite contract. For example but not limited to:

  •  Respite: General relief (hours based on need)
  • Respite as Daycare, Support Services, in lieu of childcare: This is generally used for working parents whose child is not enrolled in a daycare program, regardless of the time (based on proof of daycare need)
  • Respite as Exception: This is used to issue families, generally a 1 time, addition of hours to cover a particular need.  Medical procedure, no school, parents are out of town, etc.

What to expect with your UCP-OC Respite Worker:
All respite workers go through ongoing trainings and certifications for the following: CPR & First Aid (to be renewed every 2-3 years), seizure awareness, child abuse/neglect recognition and reporting, HIPAA, Blood borne pathogens, communication skills, cycle of grief, sign language, use of assistive technology, toileting and transfers, behaviors and positive reinforcements along with the ABC’s of behaviors—along with much more. UCP-OC continues to add to its trainings as opportunities present themselves and as the need arises.

UCP-OC is a professional respite agency; and although we do not provide behavioral respite or work on behavioral goals, we are many times viewed as behavioral respite due to the strengths and skill sets of our team. Our employees ensure behavioral goals and respite are fused into the service we offer. Our staff work on ADLS (All Daily Living Skills), provide sibling support (allows parents to reconnect), offer basic help with homework, provide light meals, encouraging speech, encourage age-appropriate behavior, increased functional skills, decrease mal-adaptive behaviors, and increase and encourage socialization.

Physical Therapy Month

pediatrictherapyIn honor of National Physical Therapy Month (yay October!), we want to do a fun/informative post.

10 signs that you’re a Pediatric Physical Therapist

10- You are used to answering the question, “What?? Why do kids need physical therapy?” after someone asks what you do.
9- You get excited to wear fun socks to work because let’s face it, you barely wear your shoes at work anyway.
8- No matter how your hair is styled for the day, by the end of the day, your hair will be tied back in a pony tail.
7- You have your standard 5 nursery rhyme songs you know by heart and can sing all day long.
6- You have at least 1 toy rolling around in your car.
5- You’re a pro at walking in a squatting position and walking backwards down stairs.
4- You are able to use 1 toy for a minimum of 5 different activities.
3- You know how to sign for “more” and “all done.” (you probably just read this again and did the sign with your hands )
2– You’ve developed cat-like reflexes to dodge flying toys and to catch falling children.
andddd last but not least!
1- You still get excited every time one of your patients reaches a new milestone

–Lisa Kerfoot, Physical Therapist, DPT, Manager of Therapy Services

 

Make sure to tell our physical therapists how much you love and appreciate them! You can leave a comment on the blog and they will see it.

World CP Day, Child of the Month: October 2013

October 2013: Wyatt

With World CP Day being this past Wednesday, October 2nd we thought it would be fun to feature a very special boy with CP again and give you a bit of an update on what the therapists at UCP-OC are currently working on to make sure he lives a Life Without Limits!   

On World CP Day:

Please join us as we recognize and celebrate the many families and children we serve with cerebral palsy! As United Cerebral Palsy of Orange County, World CP Day is a wonderful opportunity for us to share our appreciation for your support of our organization.  We are honored to serve children with any developmental disability while we pride ourselves on our expertise in treating children with Cerebral Palsy.

We hope this day will lead to many more opportunities to acknowledge and support our families throughout the community that have children with many different disabilities.

We know World CP Day was Wednesday, but here is how you can get involved still:

  1. Post your idea to change the world for people with cerebral palsy!The best ideas will be given to inventors, to turn dreams into reality at www.worldcpchallenge.org
  2. Like our Facebook page, follow us on Twitter and even YouTube Channel!
  3. Share this story with a friend or on your Facebook.

On Wyatt Review & Update:

Five years ago, we noticed our sweet 6 month-old son missing developmental milestones, and we began to search frantically for a cause. Our answer was clear, yet one we struggled to accept. Our son, Wyatt, was diagnosed with hypotonic cerebral palsy.

It is estimated that over 600,000 children and adults in the U.S. manifest one or more of the symptoms of CP. Currently 8,000 babies and infants are diagnosed with the condition each year.

Cerebral palsy (CP) is damage to the brain, occurring during fetal development; before, during or shortly following birth; or during infancy, that affects the overall muscular skeletal system. CP is characterized by an inability to fully control motor function, particularly muscle control and coordination.

For Wyatt this presents itself in very low muscle tone resulting in difficulties balancing and holding himself up; and in his speech, gross and fine motor skills.

Daily life is fatiguing for our son.

With his diagnosis looming over us we were worried. Would he be able to go to school and have the same opportunities as any child? My wife Jemi and I discovered the search for services is multifaceted and complex. After three years of Wyatt receiving therapy at many different therapy offices, we found UCP-OC and were able to breathe a sigh of relief. His care is no longer fragmented and Wyatt receives all the services he needs in one place.

United Cerebral Palsy of Orange County (UCP-OC) is a place with clinical and social support; a place that could answer our family’s questions; a place that feels like home. All therapies are play based to encourage a fun and motivating atmosphere.

Wyatt_TireswingPhysical Therapy: Wyatt receives physical therapy that is helping him to walk confidently on his own, go up and down steps and keep up with his peers. His physical therapist, Cori, has Wyatt ride swings for vestibular stimulation and to work on core strength. On the tire swing he strengthens his core and lower extremities by leaning over to pick up toys on the floor.

Occupational Therapy: OT helps Wyatt with his play and fine motor skills, such as holding a crayon to color and dealing with changing social environments so he can experience his peers to their fullest and to make friends.

Speech Therapy: Wyatt no longer receives speech and language therapy, however many children with CP have difficulties with their speech. Therapists work on strengthening speech articulators (tongue, lip and cheek muscles) as well as breath support to help facilitate speech. Many of the children practice their speech skills with the help of an iPad.

Today Wyatt attends school and participates in the classroom with his friends. He feels like everyone around him, and as a parent that is all we can ask for. We have new hopes and dreams for Wyatt, and we are seeing these become a reality with the help of UCP of Orange County. Wyatt has a bright future of more growth!

Sincerely,

Jemileth & Mark Dipko

Proud Parents of Wyatt

UCP SmartBrief

Disability Update

Virginia Tech clinic seeks new treatments for cerebral palsy
The Virginia Tech Carilion Research Institute has created the Neuromotor Research Clinic to find new treatments for cerebral palsy. A $4.2 million NIH grant will be used for a program that tracks 135 children with CP who will get high-intensity therapy for hemiparesis. The Roanoke Times (Va.) (8/15)
 
Cerebral palsy a risk factor for severe flu-related complications in children
Medical records gathered from 79 hospitals across 12 countries revealed six risk factors for identifying children at greater risk of suffering severe complications due to influenza. The risk factors included dehydration, breathing problems, need for oxygen therapy, heart rate above the normal age-based range, and history of conditions such as chronic lung disease, cerebral palsy and developmental delay. The findings were published in the British Medical Journal. The New Zealand Herald (8/15)
Other News

Assistive Technologies

How iPads make education more accessible to students with disabilities
The range of mobile applications available on the iPad offers many options for students with various disabilities, adaptive technology expert Therese Willkomm said during a four-day iPad boot camp in Concord, N.H. This article highlights some of the apps discussed at the conference, such as TextGrabber, which reads aloud pictures taken of text. Concord Monitor (N.H.) (8/15)
 
Companies ask FCC to exempt e-readers from accessibility rules
Companies such as Amazon, Sony and Kobo asked the Federal Communications Commission to exempt their e-readers from requirements that they be accessible to people with disabilities. The companies said e-readers are not designed or marketed for advanced communications services, but disability advocates disagreed and pointed out that some of the devices are being marketed for school use. Disability Scoop (8/14)

 

Transitions

Some Va. students with disabilities receive incorrect scorecards
Virginia school officials will meet with representatives from education and testing company Pearson to discuss the more than 4,000 incorrect scorecards that were given to students who took the Virginia Alternative Assessment Program. Officials are saying the problem arose when students’ scores were converted into proficiency levels — fail, pass/proficient or pass/advanced. The Washington Post (tiered subscription model) (8/13)
 
Ohio bakery helps workers learn business operation skills
Crumbles Bakery in Poland, Ohio, hired workers with disabilities, providing employment and teaching them how to run a business. Workers participate in all aspects of the business, from packaging and baking to cleaning. WFMJ-TV (Youngstown, Ohio) (8/18)
 
Other News

UCP News

World CP Challenge starts in one month!
Have you registered your team for the World CP Challenge yet? This four-week fitness activity helps to support people with cerebral palsy and other disabilities, and starts Sept. 4 and ends on World Cerebral Palsy Day, Oct. 2. Teams of four challenge themselves to take 10,000 steps a day — and nearly any activity, from walking to biking to yoga, can be converted into steps. Join today to get active and help support a great cause!Help Life Labs make the 2013 Design-athon a success!
 
UCP’s Life Labs is partnering with Enabled by Design to hold the 2013 Enabled by Design-athon, a two-day event dedicated to finding innovative solutions to problems faced by people with disabilities. Through presentations, speeches and active designing, the Design-athon is a great way to jumpstart ideas that make a difference in the lives of people with disabilities. Check out the Life Labs blog to learn more about the Design-athon and how to get involved.
 
Some people grumble because roses have thorns; I am thankful that the thorns have roses.”
— Jean-Baptiste Alphonse Karr,
French critic

Life’s a Journey with CP and Me

Hi Everyone at UCP-OC!katyfd-225x300
Katy here—I just returned from UCP-OC’s bike camp at Soka University in Aliso Viejo (where I am going into my 3rd year for my BA!) For those of you who are unfamiliar with the week-long camp, it is put on by iCanShine, a national organization that provides quality learning opportunities in recreational activities for individuals with disabilities who are determined to learn how to ride a bicycle. The camp is run by UCP-OC and Down Syndrome Association of Orange County and both organizations are very grateful for the support of the Pujols Family Foundation who sponsored the camp.
With the help of some amazing volunteers, the kids spend five days on adaptive bikes in the hope that they will be able to ride a two-wheel bike without any assistance! Having gone on the final day of camp, it was so awesome for me to witness these kids getting out there on two-wheeled bikes for one final ride with confidence with smiles on their faces! I was very proud of these kids with knowing how hard it is to put in the physical effort it takes to succeed like they have.

This experience—although I was not there to witness their entire progress—made me reflect upon my own past when I learned how to ride a bicycle. Having CP, it may seem unlikely that bike riding is actually my favorite form of exercise, but it is true! I did not learn how to ride a bike until I was nearly nine years old (four years later than my twin sis) but I never would have thought that it would become such a fun part of my active lifestyle! The day I learned how to ride a bike is a day I will never forget; my parents woke me up that morning and told me this was the day I was going to ride a two-wheel bicycle. Before then, I just had training wheels and started to feel like I was never going to be rid of them, how embarrasing! My whole family and I took a trip to the boardwalk in Huntington Beach, my hometown, and my dad placed my bike on the side nearest to the sand. He told me to get on my bike, and that he would help me start, but by the end of the day he made me promise that I was going to ride without any help! Looking back, my whole family seemed pretty fearless about my CP—and I think that was a great thing for me at the time! It forced me to continually challenge myself, because everyone around me was always doing the things I wanted to do, but just took longer to learn and adapt to because of my CP. After several scary spills and nose dives into the sand, I became more and more frustrated with my lack of balance, but it motivated me to keep going and I eventually grew more comfortable with the fluidity of my legs and found my rhythm! I was exhausted and probably a little shaken up from the day, but as you may know already, CP comes with its fair shares of scraped knees and hands just from everyday life! Now, biking is the best thing for me; it’s low impact and great cardio! The only adaption I make is adding a foot strap on the left pedal, so my foot won’t slide off in the front. I’ve been riding my beach cruiser around ever since that day and I find it so freeing because I can go much faster than if I was running, and no one would ever know I have a physical disability when I am on a bike!
Looking back, learning how to ride a bike was just the next obstacle that I was determined to overcome at the time and I know myself well enough to admit that I am the type of person to never back down from a challenge, no matter how difficult my CP makes it for me!
That is probably the type of attitude that I’ve carried with me over the years and got me through my years of AYSO soccer, over Yosemite Falls, and into my active lifestyle where I am today. I have had to slow down quite a bit because my CP does make running and rigorous activity difficult; so I just continually adapt myself to what my body can manage on a daily basis! It has taught me to value my body, and has improved my capacity to understand my limitations. I know now that however frustrating they may be—we all have our own limitations whether we set them for ourselves or not. Some people I’ve encountered over the years call me courageous or inspirational, but I prefer to think of myself as a resilient human being… we all have our own struggles to endure—we just have to learn how to better deal with them when we can’t always overcome them, and that’s what my CP has taught me.

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Child of the Month: June 2013

June 2013: Knightly

Knightly Spring AppealAfter three years of desperately trying to start their family, David and Drexelle learned that they were going to have a baby. “We created a hope for the future and an image of what our children would look like and two days after our son was born it felt as if those were stolen from us” David recalls.

“The nurse picked up our baby, turning him over like a ragdoll, and pinpointed everything on his body that looked like Down syndrome.”

Left with a diagnosis and anxious for a place to go, Regional Center guided the Park family to United Cerebral Palsy of Orange County (UCP-OC) for in-home early intervention services when Knightly was only 1 month-old. Ana Reyes, UCP-OC’s early intervention specialist, entered the Park’s home and started working with Knightly immediately.

The first years of a child’s life are critical to their development. For a child with special needs early intervention is the main line of defense to remain on the track with their developmental goals. In-home services allow UCP-OC to work on Knightly’s goals in his natural environment using tools at the family’s disposal to stimulate the different areas of global development such as fine and gross motor skills, sensory and tactile stimulation and cognitive development.

For Drexelle, Ana Reyes has not just been a specialist for her child, but has helped her through the grieving process. “I look at her and I am inspired. She sits and listens, and is truly an inspiration. She gives me confidence as a mother that I can do this. Most of all, she loves Knightly and that is a gift, especially in the beginning when we were worried if people would love our son. We mourned for what we thought our child was and now we experience what he really is and how beautiful he is.”

With Ana’s dedication, early intervention and the resources UCP-OC provided the Parks, at 9 months Knightly is now on target to meet all his developmental goals and is learning to crawl. UCP-OC is monitoring his development; and remains vigilant and aware of what services he will need to continue thriving.Park Family 2

“We are giving back to UCP-OC this spring in gratitude for all Ana and the organization have provided our family. With help from UCP-OC, Knightly can fight to have a great life, a Life Without Limits.”
–Drexelle & David Park

In-home therapy is a cornerstone of UCP-OC’s robust 60 year history in Orange County. This service enables UCP-OC to reach families who are unable to leave their home either due to lack of transportation or medical frailty of the child. Of the 4,000 families UCP-OC impacts, 20% of our therapy families receive services in-home. Many of whom are low-income families. Funding for early intervention services continues to be cut and your support is needed to guarantee these families are served.

Your gift will help inspire a mother and father and assist a child in fighting for a Life Without Limits.

By sending in your gift or going online to www.ucp-oc.org/give, you can help build a child’s future.

Thank you for making a difference in the life of a child.

Knightly email signature

A Mother’s Reflection on UCP-OC

In a class assignment, one of our parents was asked to describe how parents of children “go through” the stages of grief. After sharing her heartfelt and emotional answer on how she views UCP-OC, we were left speechless and eager to share with our families. We hope you enjoy it and can connect with her feelings. Please leave a comment to share with Adriana!

 I have four daughters. My two oldest have ADHD and my youngest child was diagnosed with Cerebral Palsy. Reading each stage reminded me of the day that I was told of my youngest having Cerebral Palsy. For me it didn’t feel like stages were the best word to describe the emotions it was more like waves. When the doctor first told me it felt like I was standing on the beach seeing this giant tsunami coming right towards me. I looked to the side and saw my three oldest Alyna daughters playing in the sand with their dad making sand castles. I have my baby in my arms and start to run as fast as I can away from the tsunami (shock, denial).  I run towards my family, I saw a little canoe with some life jackets and yell at them to get the jackets on…the same time praying that the wave doesn’t kill us.(fear, anxiety) The wave hit and knocked me down and I couldn’t breath.(depressed, stressed, guilt, hopelessness) I felt like I was drowning, I was kicking and trying to swim to keep my head above water. I had no more strength to keep swimming and I couldn’t breathe. Right before I start to sink God sends a lifeguard. The life guard puts you on his lifeboat and takes you back to shore, talks to you,  gives you techniques you will need, and shows you where to find some answers. You look up and see your baby’s face. It looks like the sun setting on the beach; that moment when the sun hits the water and it’s the most beautiful sight ever. You know that you are going to have to face the ocean of waves again but this time you do research and use all the resource available such as therapy for the baby, support group for the family, online classes etc. You turn around and there it is again, the Tsunami building strength, but the difference is you don’t have a canoe or life jackets, instead you build a submarine. You help your family in and right before you shut the lid to this steel, strong submarine you look straight at the wave and think BRING IT!

 

                                                        –Written By Adriana, mother of Alyna

Please click here to find out how you can make an impact on children like Alyna and mothers like Adriana!

Life’s a Journey With CP and Me: National Siblings Day

katyfd-225x300Hi All,

I hope you are all enjoying your week so far, in commemoration of National Sibling Day (earlier this week) I am going to talk about having siblings and what that means to me and CP. I have an identical twin sister, Sara, an older brother, Matt, and a younger sister, Daisy. None of whom have CP—but all of whom fully understand what growing up with CP has been like, just from an outer perspective!

I truly believe that my upbringing as a child has allowed me to be who I am today. With the help of my sibling, my confidence went unshaken, and my fear of judgment drifted away. With the help of my siblings, I was happy and my dream of normalcy came true. However, as children, none of us really knew what CP was. We were too busy playing at our neighborhood park or teaching each other how to ride a bike so we could all keep up with the other kids. I didn’t learn how to ride a bike almost three years later than my twin! But at the time, we all just accepted the fact that “Katy just takes longer to do things with her legs.” It was never something I mentally let slow me down, because my siblings never treated me any differently. As far as I remember they knew that I was slower and less coordinated, but it was just a fact and nothing beyond that at the time. I am so grateful for that, in hindsight. Even up into high school, my siblings and I always did things together and my CP was never an issue that separated me, from them. Whether it was playing soccer or just hanging out and riding our bikes to the beach—I did everything just the same, but at a different pace and that was easily understood by all. I am lucky that my family and I are so close that we have been able to grow up with this special bond, and I think that my CP has made us closer, in a way. Sara and my brother, Matt always looked out for me; they were my “protectors” at school and when we were running around being kids. 

In an interview with a UCI college student, Irene Sanchez, Sara remembers: “When I think about growing up with my sister Katy, I think back to us always being together and riding our bikes to school or finding each other when we were apart because I always felt the need to be with her and to make sure she was ok.”

I always felt that, and still do. Whenever we cross a street Sara still makes sure I am beside her, just like she did when we were little on the school bus every morning! I remember one time, my brother Matt saved me from falling off the side of a moving escalator! Whenever we went on family hikes he always stayed behind me in case he had to grab my arm, as I often stumbled around on the loose gravel. I always felt that Daisy is patient with my CP and she understands how it effects me, both physically and emotionally. It is that kind of understanding and protection that I have been blessed with, and the fact that I never had to ask for it makes me all the more thankful for my amazing siblings. To this day, Sara, Matt, Daisy, and I remain the best of friends and we will always be loyal to one another as we continue to grow up and create our separate lives. Needless to say we all love each other very much and are all a part of one another in so many ways.  That is what my siblings mean to me and my CP as I have grown from a small child into the person I am today!

Katy siblings

Child of the Month: February 2013

Ordinarily when writing the child of the month feature I meet with the family to hear their story and then I write our post. This month’s child story came directly to my inbox thanks to Ms. Pati! Kai’s father was kind enough to send me Kai’s story. Sweet Kai’s story was too touching to re-write in my own words or even shorten; he truly has a story to be told.

 

February 2013: Kai

“Kai was found in a cardboard box near a water tower near Jincheng City, in central China. He was raised in an orphanage with over 300 children.”

UCP-OC Child of the Month_Kai“On February 20, 2012, Kai Min was united with my wife and I. He was 2 years 10 months old. It took my wife Lisa and I two years through the International Adoption process to get to this point. We had limited information on his health history except that he was born with rectal malformation and was abandoned by his parents at one day of age.

Our story unfolds from here. Lisa and I were given basic information on his psychosocial and motor development. Kai was described as “shy and kind.” He was described to be able to speak 5 words, sit alone but unable to walk. We were told he was potty trained and no longer had any bowel issues because of a surgical repair. It was recorded that he weighed 19 lbs. and we received 4 photos of him in the orphanage. Retrospectively, he looked very sad, and small compared to his fellow orphans.

Upon our “Gottcha Day”, the day orphans are united with their forever family, we saw a pale small fragile little boy that was expressionless. He showed no attachment to the caregivers that brought him to the Civil Affairs Office where we were united. Kai now entered into a new world.

UCP-OC Child of the Month_Kai
Kai’s Physical Therapist Cori uses an inverted half foam roll while he plays, reaches for toys and squatting to pick up fallen ones, in attempt to activate the muscles required for balance.  

On quick inspection, Kai appeared well cared for. It was not until we spent the next several hours to days that we realized his deficits. The back of Kai’s head was flat from spending all his time on his back in a “crib.” He could not roll, or lift his head off the carpet while lying on his stomach. Kai did not crawl or scoot, he could sit up if propped up. The smallest imbalance made him fall flat on his face. In fact, he had a permanent bump on his forehead from seemly repeated falls. Kai was 100% immobile at the ripe age of almost 3 years. When spoke to in Chinese, Kai had no response. We quickly discovered he had never learned the language. Surprisingly to us, Kai knew too well his toes and would play for hours with them by himself in the hotel room. Kai was a victim of his own body. We can only believe that he was left in social isolation in a small cradle that did not even allow him to move. Nonetheless, we were terrified, mad, and lived in disbelief.

Upon Kai’s arrival to the USA, I made multiple doctors’ appointments to have him formally tested for any congenital syndromes that might have been missed or misdiagnosed. After being evaluated by 7 specialists, and denied services by the school district, it appeared that Kai’s developmental delay was due to environmental issues. My wife and I were familiar with Help Me Grow, as our daughter was born premature. Out of the persistence to get Kai help, Help Me Grow directed us to United Cerebral Palsy of Orange County. UCP-OC welcomed Kai with open arms. They were the first organization that navigated the care and therapy that was needed for Kai.

 Today, Kai participates in 3 group sessions, and two individual therapies per week. Kai is blossoming into a boy that walks, runs, plays and climbs at every opportunity. He is beginning to put two words together. All these milestones in just 5 months of treatment! Kai is a new boy and no longer a victim of his own body. He has a long way to come, but nevertheless, he has been given the gift of a “Good Life” –a song my wife and I dedicated to him before meeting him.

Thank you UCP-OC for all your love and support of Kai.”

Sincerely

Dr. Joe & Lisa

If you would like to make a gift to support the services that are helping Kai and his family please click here or contact Elizabeth Wylie at ewylie@ucp-oc.org for more information

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