Down Syndrome
Down Syndrome Advocacy Event May 2015
“We Strive to Help Others”
In March of this year, I was given the wonderful opportunity to partner with the Central California Association of Neonatal Nurses {CCANN}. In this partnership, I was also given the privilege of coordinating with the Down Syndrome Association of Central California {DSACC}. Together, we all were going to coordinate an educational nursing conference focused on Down Syndrome. After months of planning, the day of the conference, May 2nd, finally arrived and the event was a huge success!
The conference was held at Valley Children’s Hospital and its attendees were able to learn about the multiple facets of Down Syndrome and how it affects not only the child but their family as well. Speakers at the conference included Dr. Michael Allshouse, Dr. Paul Francis, Kelly Cahil, Heather Flores, Kelly Hanson, Bob Orcutt and Sandy Eaton. During the breaks at the conference, attendees were able to visit such vendors as: Vygon, Footprint, Purium, Mead Johnson, Kentec, Neotech, CCANN, Grannie Bea’s Handcrafted Soap, Dr. Rooster’s Specialty Foods and DSACC. All of these wonderful and outstanding vendors were generous enough to donate a portion of their sales from the conference.
By working together to host a marvelous educational opportunity, the Central California Association of Neonatal Nurses was able to raise funds and awareness for the Down Syndrome Association of Central California [http://www.dsacc.org/]. In the end, we raised $800 for DSACC. These funds will be used to help DSACC in their goal of improving awareness of how beautiful the life is of a person with Down syndrome and that these individuals are a part of our community and need our support and encouragement.
“Love Conquers All”
Here in Fresno, we are able to have the wonderful opportunity to have the support of the Down Syndrome Association of Central California {http://www.dsacc.org/}. This Association’s mission “is to enhance the quality of life for people with Down syndrome and their family members through education, social and support programs. The goal of the society is to provide programs that promote greater awareness of the developmental, educational, and societal potential of a person with Down syndrome on the part of the general public.” The Central California Association of Neonatal Nurses {CCANN} has been given the honor of partnering with DSACC this year to help them in their goal of improving awareness of how beautiful the life is of a person with Down syndrome and that these individuals are a part of our community and need our support and encouragement.
My cousin, Jacob Michael Glenn Pepper, turned 16 years old in 2015 and my oh my how proud I am of this little man. The Lord has truly blessed me and all of Jacob’s family with the honor of seeing Jacob grow up over the years. Having a family member with Down Syndrome has taught me to realize that life is precious and that we are all unique. From an early age, Jacob was always loveable and brought a ray of light into my life. Over the years, he developed his own unique personality. Music is one of Jacob’s true loves. When he was younger, he loved any toy that played music. He loved to watch Barney the purple dinosaur on tv/video. We would buy him any type of musical toy; such as, a small piano and a little guitar. He would hum and try to sing along to the music. He also began to love to dance. Whenever there was a song playing that he liked, he would dance his heart out.
As he developed his speech pattern, for a while it was difficult at times to make out what he was trying to say. But we all tried our best to be patient and let him speak and voice his opinion. As he grew older, he wanted to say grace when we met together for dinner. When we got together for birthday celebrations, he would be the one to sing happy birthday.
He lived in California with his parents, older sister and younger brother until 2009. His dad then got a job offer on the island of Kauai and the whole family moved abroad. This was a truly difficult time for the family that was still in California. The miles apart would be so hard for us. We knew that we would not be able to see Jacob and his family as often as we had been. But, the Lord has a reason for things and all we could do was hope and pray for the best. We were able to have a wonderful going-away party for the family and gave them all our love and prayers before they ventured off. The following year, we were able to go over to Kauai and spend 2 weeks with Jacob and his family. What a wonderful time we had! Knowing Jacob loved music and dancing still, we took him to a Luau. There was much music and dancing. There was a performance of all the many cultures on the island of Kauai, from Polynesian to Hawaiian. During the luau, the performers offered to teach the guests how to dance some hula moves. Jacob and his cousins went on stage with some other children and had a phenomenal time listening to the music and dancing. Times like these helped us to see how truly special Jacob was. Sadly, we had to return to California…but we hoped to return to the island another time.
In 2012, we were able to go back to Kauai and see Jacob and his family. This was going to be a truly special trip, because Jacob and his older sister, Breanna, were both graduating from school. We were able to celebrate the wonderful accomplishments that these two had been a part of. They each had their own graduation parties and were surrounded with family and friends. It was amazing to see how loved these two were. In 2 weeks’ time, though we had to say our goodbyes and return to California.
Sadly, it has been three years since we have seen Jacob and his family. However, we still keep in touch. We keep in touch with phone calls, text messages and Facebook. Jacob’s family sends us pictures and videos of him. I received one not too long ago of him at a Polynesian Festival, and he was dancing to the music and it brought tears to my eyes because I miss him and his family so very much. In time, I hope that we will be able to see Jacob and his family once again. In the meantime, I am able to look back on photos of our times together and remember the fun we had…the beautiful memories we made together and that brings me comfort. For though we are miles away from Jacob and his family, our hearts are always close and no distance can separate the love we have.
Watch our Flipagram and share. Thank you for all your support. CCANN raised $800 for DSACC- Down Syndrome Association of Central California
Posted by Central California Association of Neonatal Nurses on Friday, May 8, 2015
