Despite having spinal muscular atrophy which prevents him from moving anything below his neck, his electric smile and vibrant attitude impacted us and reminds us what’s most important in life.
We first met met the three of them; Jesus (father), Nelly (mother) at a small chapel near the hospital where Yvette is receiving medical care. Sebastian was sitting on his father’s lap, singing along with everyone. The father would move the little boys hands as if he was orchestrating the entire choir. They both sang aloud with cantaloupe smiles. For a moment the world stopped, I couldn’t see or think of anything. I couldn’t even hear the music. I was fixated on this family full of love. Full of life despite their circumstances. The love and happiness I observed this family have for each other was breath-taking.
After a nice conversation Yvette and I went back to our place feeling grateful and curious. How could this 6 year old be so happy??? Despite being confined to a wheel chair? His soul was wise and mature beyond his years. They shared with us that they knew they would have to come back several times to give this treatment a fighting chance. However they were not sure how they were going to do it as the mother can’t work due to care for Sebastian being a full time job. But they had total faith it will work out.
Over the next week we bumped into the three of them several times. One day Yvette and I were walking by a store and noticed a blue toy truck and decided to buy Sebastian a small gift. He was surprised and grateful at which point gifted us with his electric cantaloupe smile. The next day I was sitting in the waiting area to greet Yvette when she was done and who starts walking my way? Nelly waives me over to me. I walk over and notice Sebastian had a mischievous grin. He lifted his hands as high as he could and said: “we bought you some gifts” with so much love and enthusiasm in his voice. Needless to say I was shocked and grateful. It was a book and a shiny blue rock which he told me was for good luck.
I graciously thanked them and went back to sit down. I held his gifts in my hands for a moment and began to cry with so much love in my heart. Many six-year old boys in his situation would be depressed, angry brats and focused on what’s wrong with them. Not Sebatian. He has an incredible servant spirit whose only mission is to light up the world. As a six-years old he’s figured life out more than most adults I know.
The next day Sebastian presented Yvette with a gift as well. A beautiful shiny purple rock shaped like a heart. Yvette was brought to tears, thanked and hugged this little angel. Over the next week we spent a lot of time with the Santa Cruz family sharing our past, goals, dreams, challenges and life’s victories. During one of our conversations Sebastian said his biggest goal was to walk one day.
My heart melted. How many of us take for granted what we have and focus too much on the frivolous problems we currently have. Sebastian brought so many lessons: despite our circumstances we can appreciate what we do have. Even if it’s just the ability to move and use our head. That we can always dream and have a compelling future when we focus on what we want as opposed to don’t have. Life is not our circumstances but what we make of them.
If the only thing you can do is move and use your head? Then move it and use it and do it with a smile. Instead of feeling sorry for yourself focus on putting a smile or inspiration to a fellow human being. I don’t know if Sebastian will ever walk (I have faith he will) but the angel wings this little boy has, will take him places most only dream of and money can’t buy.
Yvette and I are driven by creating magic moments for people. One day we asked each other, “how can we light up Jesus, Nelly and our new little angel? And surprise them as well as contribute to Sebastian’s ultimate dream??” We decided to surprise them with a private amount of money and a card that said, “please accept this gift with love. We hope it will help contribute to help Sebastian return and receive the treatment he deserves, we know that one day you will be in a position to pay this forward.”
We gave it to them at the eatery, thanked them for the inspiration, laughs, tears and love. They received the envelope without opening it. We walked away with a warm felling. As we walked away discussed how good it felt to give without getting anything in return. No tax benefits or a crowd cheering for giving. It was from the heart and in private with no strings attached.
Later that day they came to find us. Both were in tears and the first words from Jesus’ mouth, “we can’t accept this!!” How many of us are sometimes are too proud to accept a hand out? As adults our egos and pride sometimes gets the best of us. I looked at Jesus and said, “it’s not for you so how can u reject it? It’s for Sebastian.” I looked at Sebastian and he had this shocked look on his face. I said, “Sebastian do you accept our gift??” His shock turned to confusion. His confusion then to gratitude and screamed with his cantaloupe smile, “Si, Si!!!”
As an innocent child from God he doesn’t have the negative filters and walls we put up as adults. The feelings of less than or that we don’t deserve. We hugged, we cried and went about our way.
We wanted to share this story that has impacted us for life for the lessons we can all learn from and bring some soul to social media. So much materialism and self promotion. Every once in a while it’s great to share things that are the most meaningful in life. Thank you Sebastian for forever changing my life with your presence, attitude and heart.
Many of you read his story on FB and asked how you could help. We are collecting $10,000 through our friend's non profit where 100% of the funds will go to help him pay for this treatment at the center where I healed in South America. If any of you want to donate, even a dollar or five will help, it would bless not only him but come back tenfold. And of course, your contribution is tax deductible.
Sending you all so much love and light,
Dave & Yvette Ulloa