foundationThe Sunlight Alliance Foundation (SLAF), a 501c3 nonprofit organization, was created in 2007 as a response to the inspiring story of a mighty young warrior named Jelani. Jelani was born with a severe congenital heart defect called Hypoplastic Left Heart Syndrome. His mother found out when she was 20 weeks pregnant that he would most likely not live past birth. Jelani has had numerous open heart surgeries, many complications, and even coded. The doctors did not think Jelani would survive the night, but he did. He fought and he fought to stay alive. As a small child, Jelani lived at a pretty high elevation that made it harder for him to breathe and to grow and develop. He was on 3 ½ liters of oxygen 24 hours a day and tethered to a 50 foot oxygen cord. The doctors suggested that his mother relocate him to a lower elevation to give him a better quality of life. The SLAF assisted Jelani and his mother in relocating from Utah to Arizona once he was strong enough to move. Hence, The Sunlight Alliance Foundation was born. The mission of SLAF is to actively work with individuals and families to provide support during life’s challenges. The SLAF is a network of individuals committed to growing, sharing and healing the hearts of humanity – one heart at a time.

 

The Story of how The Sunlight Alliance Foundation Came to Be!

My name is Sunny Dawn Johnston.  I am the founder of The Sunlight Alliance Foundation.   I wanted to share with you a story of how The Sunlight Alliance Foundation came to be and of the “Mighty” Warrior Jelani, who is little boy who inspired me to create this foundation to help, love and support other children who face challenges and hardships the way he has.

My cousin Amy, found out when she was 20 weeks pregnant, that her son would most likely not live past birth.  He was diagnosed with a severe congenital heart defect called Hypoplastic Left Heart Syndrome.  This basically means that her baby would be born without the left side of his heart.  Jelani was born in April 2003, and underwent his first open heart surgery just four days later.  He struggled and struggled and had complication after complication.  But finally after spending two month in the Pediatric Intensive Care Unit, Amy got to take her son home. She was scared to death. She was a first time mom at 24 and didn’t really know how to be a mom, let alone a nurse too.  But together they did it.  Her son, Jelani, was super small, and very fragile and she was constantly checking his oxygen saturation levels, feeding him through a tube, and administering his medication.

At six months old, Jelani went back to the hospital for his second open heart surgery.  And again, he struggled and struggled.  But finally was able to go home.  Once he got home, Jelani flourished.  He was growing and learning and developing.  He had several challenges with different illnesses and hospital stays, but he was doing well.

When Jelani was three years old, he went back to the hospital for his third open heart surgery.  The five hour surgery turned into twelve hours and there were numerous complications.  Once out of surgery, Amy was told that her son was very ill, but they hoped he would survive.  The next few hours would be critical.  Jelani did very well and began to recover.  Two days after surgery, Jelani suddenly coded.  They did chest compressions on him for over an hour trying to get him back.  It just so happened that his surgeon couldn’t sleep that morning and came into work early… and was onsite to open Jelani’s chest right there in his room to shock his heart directly to get a rhythm back.  Amy was told that Jelani was very sick and it was possible he may not survive, but to stay very hopeful.  The next few hours were very precarious and Jelani was not doing well.  He was losing fluids as fast as they were putting them in, and his organs were beginning to shut down.  Early the next morning, the surgeon came into Jelani’s room and told Amy that unless Jelani went back into surgery, he would not make it through the night.  He didn’t know what he was going to do while he was in there, but something had to be done.  So Amy kissed her tiny son on the forehead and told him to fight like hell and watched as they wheeled him down the hallway into surgery, not knowing if that would be the last time she saw her son alive.  It seemed like forever, but she finally got the call from the Operating Room that the device that they had placed in Jelani’s chest just a few days earlier, was full of blood clots and that the surgeon was able to remove them and the device and replace it with a smaller one.  And Jelani seemed to be responding quite well.  It was several hours before she got to see her son again, but she finally did.  He had survived and she knew he wouldn’t quit fighting.

Amy took her son home 3 weeks later.  Jelani was still very sick and had a lot of catching up to do.  Since coding in the hospital, he had lost a lot of the behaviors that he had learned prior to surgery such as smiling, sitting up, crawling, walking, etc…  But once at home, he began to get better and better and was back up and running again very quickly.  He was doing well.  However, the treatments they had done to keep Jelani alive previously, were now hindering him now that he was home.  He was on 2 ½ liters of oxygen, 24 hours a day.  Imagine keeping a 3-year old tethered to a 50 foot oxygen cord!  The doctors told Amy that it would be beneficial to move Jelani to a lower elevation to give him a better quality of life.  So Amy decided to relocate to Arizona from Utah.  And I knew she needed help.

I had just started my own business called Sunlight Alliance and I decided to call on my clients and colleagues to help raise some money so Amy could move her son back to Arizona to the lower elevation.  The response was overwhelming and we raised a great deal of money that helped Amy and Jelani move all of their stuff here and have somewhere to live.  That is when I decided that I needed an ongoing foundation so I could be of service to other families who needed support as well.  So I created the Sunlight Alliance Foundation to help and support families with children with severe medical problems, special needs, and other medical problems.  This is my way of being able to give to others who are in need, because there were many people there for me when I needed help.

Jelani is now an 11-year old young man and is in 5th grade in school.  He is doing amazing.  You would never know anything is wrong with him if you were to pass him on the playground.  Jelani will need a transplant eventually, but right now, he is doing fabulous!!!! And it has not surprised any of us to know that Jelani has just been selected to appear in a calendar featuring children with heart defects. Jelani and Amy volunteer their time speaking to groups for the American Heart Association. All of us in the Sunlight community are inspired every day to continue our mission of service and support as we see how these once fragile kids are now, in their own unique way, giving back to our community as well!

It is our vision to assist the children and elderly of the world, regardless of calendar age – to heal themselves, their families, and their world. SLAF brings hope and support to people in the Arizona community who are battling diseases either emotionally, mentally, physically, or those who have been burdened with catastrophic circumstances in their lives and thus cannot cope alone in day-to-day living. The SLAF continues to express the importance of self-development and self-reliance while providing this transitional assistance that individuals and families need to grow and develop.

Since the beginning, the SLAF has supported many different families in the middle of crisis and helped give them the tools to succeed and move forward. SLAF has assisted families with children with congenital heart defects, breathing problems, cancer, and even a mother who was gravely ill, and a father with cancer and unable to support his family.

One young man that we were able to assist was a young teenager who was facing cancer. He had been through many rounds of chemo and radiation, but the cancer was very aggressive and his leg had to be amputated. His family was struggling to make ends meet due to all of the medical bills and the travel expenses it took to get him to each appointment. The SLAF was able to offer support to the family in their time of need. He is now 18 years old and working in the same company that gave him a prosthetic leg. He too, is giving back, in his way.

Another family that we were able to assist was that of a father in stage 4 oral cancer and caring for 3 small children. They were struggling to make ends meet because he was the main provider for the family and he wasn’t working due to his illness. The SLAF was able to step in and to provide the family with some relief with some bills as well as helping to create an amazing Christmas for them. Since then, the father has returned to work and has been cancer free.

The SLAF was also given the opportunity to purchase an air purifier for an 8 year old little girl with severe asthma. Her parents were working hard to provide all she needed, but struggled making ends meet with all of the medical expenses and medications that were not covered by insurance. What she needed was an air purifier in her room to help her breathe. What an amazing experience to be able to present that purifier to her and her family. They were so overwhelmed with emotion and so very grateful.

Serving our community is very important to the volunteers at SLAF. Making a difference in the lives of others and watching them grow and flourish is what our intention is behind our actions.

******************************************************************************

To donate money to the Sunlight Alliance Foundation you can do so in three ways.

1. Via the internet, through paypal

or call our office at (602) 375-6788 and we can take your payment over the phone. Upon receipt of your donation, you will receive a form to turn in with your taxes stating that you donated to a nonprofit 501c3 foundation.

If you know of someone who could benefit from our foundation, please contact us at amy@sunnydawnjohnston.com or (602) 375-6788.