A member of our UCP-OC Staff wanted to share this story with our families. She has been impacted by Angel and his family’s story. We hope you enjoy this story as much as we do!

Angel is a sweet, lovable and intelligent 24-month-old who UCP-OC has served through our In-Home Infant Stimulation program since July, 2011. Angel was born four months premature which left him struggling with several developmental delays. Tragically, Angel has trouble digesting food which is fed alternately through his mouth and through a G-tube.

Angel’s family has been faced with many challenges. His mom, now a single mother with 5 children, must juggle Angel’s many medical appointments as well as speech therapy for his 4-year old sibling. Finding a stable job to work around all these parenting demands has become nearly impossible for her. As a result, many of the basic bills for this family of 6 remain unpaid, including rent and utilities for their apartment.

As the Child Development Specialist working with this family, I gradually learned how dire their situation was and that they were on the verge of being evicted from their apartment.  To keep this family in their home, I realized that we had no time to lose and turned to UCP-OC’s Director of Programs for emergency assistance.  We contacted a generous resource which effectively, quickly and with a great sense of humanity helped Angel and his family with the amount due for the rent and utilities. Not all problems have been resolved for this family, but prompt action by UCP and our benefactors prevented Angel and his family from being on the street. “Life Without Limits” is something we practice every day in our work as an organization committed to the welfare of children with special needs and their families. UCP-OC’s impact in our communities through its various programs makes a big difference, and it’s what drives us to continue doing the work we do.

- Moraima

For more information on Swap Meet please follow this link:    http://www.ucp-oc.org/UCP/Swap_Meet.php      

Dear Janet,

I guess it all started quite a few months ago when I started looking for an adult size jogger. My middle daughter, Melissa, has CP and uses a wheelchair full-time.  Her older sister, Carrie was diagnosed October 2010 with a very rare and dangerous bone marrow disease called Hemophagocytic Lymphohistiocytosis or HLH.  She has been very sick for so long and our family has almost lost her many times.  Carrie used to be a “runner” before she became ill and so to try to support her and bring awareness to her disease many of her friends all over the country have run races in her honor.  She lives in Florida with her husband who is in the Air Force and their three young children.  Currently she needs a bone marrow transplant but they can’t find a match so she is scheduled to go to Texas in February to have a cord blood transplant to try to buy her time until a match hopefully is found. She will be in the hospital from 3 to 6 months away from her family.  Because of all of this, my son David has been training to run a race down in San Diego where he is finishing medical school.  He wanted to be able to include his sister Melissa, but wasn’t sure how to accomplish this.  First he thought he could just push Melissa in her wheelchair as he ran, but we all realized that was very unsteady and dangerous.  Then I remembered that UCP-OC had a “swap meet” site so I decided to try to find an adult size jogger that he could use.  I called and left my request quite a long time ago and honestly had given up on the idea. Realizing how expensive a new one would be I was trying to come up with an alternative.  


Last week I received the nicest call from Janet Winter asking if I was still looking for the jogger.  She had someone who was ready to donate one. I was so excited and Janet set the steps in motion for me to be contacted by the donator.  This lovely lady named Anne called me the next day and we set up the time and location for her to give me the jogger.  We met in her work parking lot and she delivered it to me.  She also met Melissa and we all talked for a long time.  I don’t think she realizes what it means to our family, we feel very helpless sometimes trying to help our sick daughter.  Because of her generosity my son David will be able to push Melissa in many races to raise awareness for HLH and to honor their beloved sister.

I can’t thank Anne and her family enough and also UCP-OC for making it all possible.  Our family looks forward to watching David push Melissa in many races in the future thanks to all of your help.

Sincerely,

DeeAnne

Here’s a great new way to help support the families at UCP-OC!

DealGooder.com is a website that is devoted to great savings and supporting local charities! They host amazing deals on anything from local concerts and salons to discounts at the best restaurants in town! Every week they sponsor a different charity and this week its UCP-OC’s turn! From February 6th through the 12th, DealGooder.com is donating 50% of all Daily Deal proceeds go directly to UCP-OC!

Come check out today’s Daily Deal for UCP-OC! www.dealgooder.com/ref/unitedcerebralpalsyOC

For every person that subscribes to their email list, DealGooder will also donate $2 to UCP-OC!

So hurry up and Turn Great Deals Into Good Deals!

Taking a look at the picture to your left I am sure you have noticed that this month is not just one child of the month. No, this month is double the fun with Damian and Victoria, the children of the month for February!  “Victoria and Damian were brought into this world much too early, much too small and very sick. They were born at only 27 weeks weighing only 2lbs each.”  As parents, Miriam and David had to watch as their children fought for their life. Between the two children, everything that could happen to a newborn did, and it was four months before the parents could bring both healthy children home. 

The months and years to come brought new obstacles the twins had to overcome, but each obstacle was met with the help of UCP-OC. Around one years-old the twins were showing signs of delayed development and a family’s PT friend referred the family to UCP-OC. She simply said, “get connected and get over there. You are looking for the best therapy and you will find it there.”

Both children came to UCP-OC for PT with Moira and Melanie, soon they began some OT with Myra, Infant Stimulation with Ria and most recently Speech with Patty and Christine. With this dream team, the twins worked on starting to crawl, fine and gross motor skills and speaking. Soon they started crawling and now they are cruising around the lobby walking greeting everyone they can.

Victoria and Damian love it at UCP-OC, and look forward to their sessions with their friends at UCP-OC.

Damian and Victoria are two peas in a pod, I dare to say they are opposites that keep each other going. Damian is cautious and calculated. He analyzes each situation before making a move. Although he may be the rule follower, he is also the snuggler of the family and will shower love on those around him. Victoria is the dare-devil. She will climb anything, and there is no stopping her. She is not what you would call a “lap child” but rather she is more cautious to show affection…unless you are a member of UCP-OC, then she will love on you!

The Daboub family is the first family walking in the OC Marathon on Team UCP-OC Families for their two children and to raise money for UCP-OC.

“Now at almost two years old our babies are doing everything two years should be.  Thanks to the help of UCP of Orange County our babies have reached all of the milestones that we were once told may never happen.

On May 6th, 2012, we will be walking the 5K in the OC Marathon…. Not only in celebration of our miracle babies, but to help raise much needed awareness and funds for UCP-OC.  They need our help in order to continue offering these great services to so many children in need in our community.  So join Team UCP-OC Families and let’s help this wonderful place so many kids depend on.”

-Miriam & David

I hope you have enjoyed the holidays are starting 2012 off right! There are many things I would like to accomplish this year, but most importantly I am just focusing on staying healthy and doing well in my second semester of college. I hope to continue to spread awareness about cerebral palsy, especially to the younger people of our time because that is where we can make the greatest impact! I feel like the more people who know that there are children and teens with disabilities that aren’t getting the help they need; the more programs can continue to grow and help those who need it. It is all about education and awareness, right?

So I have been trying to up my cardio a little bit, because I would like to get a team of students and whoever else is motivated, to participate in the OC Marathon raising money and awareness for UCP-OC! Running is not easy for me, but it makes me feel strong and healthy, and I hope to continue to run for as long as my legs will let me. Since I only have CP on my left side, my right leg fatigues much faster than the average person, which makes me have extra tight leg muscles. Thankfully, I know when I need to stretch and take some easy days so I don’t overdo it!  Anyway back to what I was saying earlier, my goal for the run to get sponsors to fundraise a bit, but since we are all on a college-student budget it might just be a great opportunity to get out there and have some fun in honor of a great cause! I am probably going to get a new pair of running shoes soon, so if any readers know a great brand for someone like me with CP then go ahead and post a comment if you’d like! I’d appreciate any tips. I will keep you all on the update about the progress to get a team of runners together, but for now I just hope some people will be open to the idea when everyone gets back for the semester in February. The team for the OC Marathon is “Team Jake & UCP-OC Families, so if you are interested and want to join, (or sponsor someone) let us know on the blog here and I am sure we can get you some more information. You can also follow this link to the page, click here.

On Saturday, February 11^th, I will be speaking at a fundraising event in support of people with disabilities and UCP-OC. The event, Sea & Sky Guild’s Classic Vegas, will be an evening of dinner, cocktails, silent and live auctions and casino gaming all in support of the Sea & Sky Scholarship Therapy Fund for UCP-OC. I am honored to be a part of a night dedicated to spreading awareness about our common cause. Hopefully I will see some of you there!

Well I am off today to get my hair trimmed from my twin sis who is in cosmetology school… (I know what you’re thinking—uh oh…but she is doing so well and takes clients on a daily basis!) Great for me, though—I can always have nice hair.

Take care everyone, and I’ll get back to you in February!

-Katy

Here is the invitation for the Sea & Sky Guild Classic Vegas. If you are interested you may purchase a ticket on UCP-OC’s website. Click here to go to the site.

So please scroll through and look at a few that interest you!  Please leave us a comment with your opinions!

-Elizabeth Wylie

Child with Down syndrome is featured in Target ad campaign

New Jersey six-year-old Ryan Langston, who has Down syndrome, has appeared in print advertisements for Nordstrom and now is featured as a model in a national campaign for Target. His inclusion in the ads is drawing attention from those who note that the ad does not specifically target those with special needs. “The greatest thing that Nordstrom and Target are doing is that they’re not making any reference to his disability. He’s just another cute kid,” said his father, Jim Langston. Disability Scoop (01/09)

Study finds teens with autism faring well behind the wheel

A majority of teens with high-functioning forms of autism spectrum disorders are driving or learning to drive, according to a new study. The research, based on a national survey of about 300 parents with teens ages 15 to 18 with the disorder, also found that just 12% of teens with the disorder who already were driving had received a traffic ticket or been involved in an accident, compared with 31% of teens without the disorder who had received a ticket and 22% who had experienced an accident. Disability Scoop (01/10)

Study finds few hospitals have services for children with disabilities

Many U.S. psychiatric hospitals lack adequate services for children with autism and other developmental disabilities, according to a study conducted by Matthew Siegel of the Tufts University School of Medicine. The study found that the number of hospital units dedicated to such children has more than doubled over the past decade, to nine, but do not meet the nation’s growing need. Disability Scoop (01/12)

Researchers develop assistive devices for Stephen Hawking

Researchers at Intel are working on new assistive technology to help facilitate communication for renowned scientist Stephen Hawking, whose motor skills continue to deteriorate from a progressive motor neuron disease. Possibilities include devices that detect expressions, eye movement and brain waves, company officials said. TechNewsWorld (01/10)

Voters with disabilities to test iPads in Oregon election

KDRV-TV (Medford, Ore.) (01/12)

Devices enable communication for students with autism

Some students at a Texas private school for children with autism use handheld Vantage Lite computers to communicate. The devices allow students to choose symbols and words to express themselves, which teachers say helps alleviate frustration and behavioral difficulties for some students. “I can’t think of a better gift of language in these communication devices for a child who does not have a voice,” said Rosemary Garcia, the mother of a student. Victoria Advocate (Texas) (01/08)

ESEA draft draws criticism from policy makers, advocates

A draft bill by Rep. John Kline, R-Minn., to reauthorize the Elementary and Secondary Education Act is drawing criticism from some policymakers and education advocates. Education Secretary Arne Duncan and several congressional Democrats object to many aspects of the bill, while special-education advocates say it lacks accountability regarding the education of children with special needs. Education Week (01/10)

Va. show highlights work from artists with disabilities

WVIR-TV (Charlottesville, Va.) (01/11)

Teen once told he’d never walk, now running half-marathon

Matthew Taylor was just 6-months old when he was diagnosed as right-side hemiplegic, and soon after he was diagnosed with cerebral palsy. The family was told he would never walk without the assistance of a walker but he surprised everyone at 21 months when he took his first steps. His journey has been filled with therapy, Botox injections and different medications. The difference was seen when he began the SynchroMed II Programmable Pump by Medtronic that administers Baclofen directly to the spine. One day soon after he began using the pump he noticed he could use his right hand to turn on the TV. He began running with the cross-country team and has not looked back since. Fox News 1/13

Claim: Girl denied transplant because she is ‘Mentally Retarded’

Children’s Hospital of Philadelphia has reportedly told one mother her daughter would not receive a life saving kidney transplant because the 3 year-old has an intellectual disability. The girl, Amelia, has Wolf-Hirschhorn syndrome, a chromosomal disorder affecting about 1 in 50,000 people. It is marked by the presence of intellectual disability, developmental delay, seizures and distinct facial characteristics. Now, it appears that the hospital may be changing course, and has asked the family to come back to the hospital to talk about a transplant. Disability Scoop 1/17

I hope you all had a relaxing holiday that was filled with copious amounts of food and fantastic memories with family and friends. After spending time with my family, I returned to our office only to be humbled by the response of our holiday letter.

This holiday season we were blessed to work with an incredible family with a very special 2 year-old boy named Granden. Many of you that come to our facility have had the pleasure of meeting this dynamic boy running around our lobby. Even after meeting with the family, seeing Granden on a daily basis and working countless hours on the video and letter I am still touched every time I run into him and he yells “hi!” at me. He, and so many of the children that come to UCP-OC, have made my time as the Marketing and Development Coordinator here so memorable and special. I am so thankful for the daily reminder of the big picture of why we are here. UCP-OC exists so that children can reach their full potential and live the quality of life that every parent hopes for their child. The overwhelming response to our Holiday Letter about Granden shows that others believe in our cause as well and are ready to support us.  

So, with no further ado, I have the pleasure of sharing the wonderful news of the outcome of our Holiday Fundraising! Thanks to the generosity of our many supportive families, staff and donors we were able to bring in a record-breaking:

$35,000

This has brought us so much closer to our Annual Giving goal of $40,000 and our Organization’s goal of $1.3 million to continue serving the children in Orange County.

 Thank you for your continued support of UCP-OC.

Sincerely,

Elizabeth Wylie, and the entire UCP-OC Staff

If you did not have the opportunity to see the video of Granden that spoke to the hearts of our many families and donors you can view it below or on our website www.ucp-oc.org/getinvolved/granden.

Abby

Abby has been a miracle from day one.

Abby in the NICU

She is a surviving twin born at 23 weeks and 6 days, less than 1.5lbs and a just shy of 12 inches. Due to the prematurity of Abby, the doctors told her parents not to expect her to cry or make any noises in the delivery room. Much to everyone’s surprise Abby let out a cry in the delivery room, and she has been beating the odds ever since.

Abby is a testament to the importance of Early Intervention. The family started with in-home services before moving to California, and upon moving they have moved to inside UCP-OC’s facilities.  Her parents felt a connection with UCP-OC from the moment they stepped into our Life Without Limits Therapy Center for a tour. Her mother has fought for her insurance to allow them to bring Abby here.

She comes into the Life Without Limits Therapy Center for Physical Therapy and Occupational Therapy with Moira and Melanie. During physical therapy she is learning how to use each leg independently of the other, disassociation of the legs. Like many of the children here, she spends much of her time at UCP-OC working on strengthening her core. She has an incredible motivation to walk, so they work the treadmill with a harness that holds her core so she can work on the motion of walking. Abby has also started wearing orthotics so that her foot is forced in her shoe and she can move past the treadmill and walk on her own!

Abby practicing her walking

Abby has fought everyday to be at the place she is. Her determination has allowed her to catch up to normal height, weight and cognitive abilities of other children her age. She has surpassed her doctor’s diagnoses and expectations. She truly is the “Little Engine that could!”

Kimberly is a 9 year-old beauty with Down’s Syndrome and a hearing impairment.

Before Christmas Kimberly challenged her Inclusion Facilitator at a friendly game of cards, or so her facilitator thought. Kimberly took her game very seriously, poker face and all! We thought we would share these pictures with you, so you too can be touched by Kimberly’s adorable poker face.

Thank You!

It has officially been 1 month since we kicked off our Holiday Campaign, and we have been humbled by the incredible support and gifts our families and past donors have shown.

So far a total of 45 families have contributed, and we have received $18,000 through the generosity of those who were touched by Granden’s family’s story. Just today we received a very generous gift of $10,000!

If you have not had the opportunity to see the family’s video I would like to invite you to view it below. Thank you for your continued support of our organization. Please consider making a year-end donation to UCP-OC, any amount that is meaningful to you is greatly appreciated.

*to make a tax-deductible year-end gift please click here.

If you have any questions or would like to learn more about how you can get involved at UCP-OC please don’t hesitate to ask me.

Thank you,

Elizabeth Wylie

ewylie@ucp-oc.org