Thank you for your love and support for The Santos Family. Your outpouring love has touched them deeply. It has helped remind them of the love that remains in their lives, despite their tremendous loss of Noa boy. Any monetary support is greatly appreciated. Please continue to pray for the family during this most difficult time.
Noa Boy’s Journey:
He was born on January 6, 2004 with a twisted small intestine. He was throwing up and unable to hold milk down. He had a total of 4 bowel surgeries to correct the twist and adhesions he got from the surgeries. He was unable to eat for 2 years and was fed by IV. He was born neurologically normal and met his developmental milestones up to age 2. He was able to walk and talk. He loved his dads quads, the sound of music, strumming the ukulele, writing with a fluffy purple pen, playing with his sisters, and watching his favorite Dreamworks movie Spirit: Stallion of The Cimarron.
At almost two years of age, he got really sick and suffered his first brain injuries. He could no longer walk or talk. He coded in the hospital and could no longer breathe on his own. A trach tube and G-tube was placed on his 2nd birthday. We spent many birthdays and Christmas’ in the hospital. He was diagnosed with a rare mitochondrial disorder affecting all of his bodily systems. He survived and nine months later was released home on a ventilator and tube feeding. He was bed bound unable to sit or roll. He required 24/7 skilled nursing care. At this point in his life, he was able to smile and interact with us. He was able to move his arms and legs. He was the happiest kid through all of this and had the best sense of humor. We thanked God every day for his happiness.
He was able to progress at home with the care of his family, home care nurses, and tutor. He has had many infections and hospitalizations. He also lost his left foot from an IV.
At age 7, our lives drastically turned again. He had a generalized seizure and suffered more brain damage. He lost the ability to smile and move his arms and legs like he used to. We lost another part of him which was another devastating blow.
Two years after the seizure, he smiled. This was the best day of our lives to see him smile again.
Since then he had many issues related to immobility including constipation, urine retention, and spasticity. He also had a platelet disorder and was prone to bleeding.
In November 2016, he started having intestinal bleeding. He was hospitalized again in February for the same thing.
He was bleeding again in March and we made the hardest decision of our lives to put him on Hospice. But on Hospice we were able to care for him with a different approach with less medications and Poi! He did great on poi. We also gave him bananas, papaya, and sweet potatoes. He did very well for two months and was the happiest we had seen him in years which gave us so much comfort. In the ending of June he started bleeding again. On July 1, 2017 at 8:30pm Noa started his new journey to heaven. He was surrounded by love and all of his family.
Noa impacted everyone who cared for him and brought us so much joy. He taught us the power of love and strength. He taught us to forgive and love. Throughout the 13 years of his journey he always loved the movie Spirit. We truly believe that he is now running free like Spirit.
We love you Noa Boy.
- Adam D.
- john tran
- Greg and Donna Park
- Diane Estill-Roman
Organizer and beneficiary
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