Bubble Boy: The true and sad story of Sebastian Luis that is forced to live in a plastic bubble!
I got a phone call the other day from my friend. He asked me: “What would you do if your little boy is forced to live in a bubble? To see your baby suffering and not be able to hold him whenever you want?”
This is a heart breaking story that i just had to write about.
My friend’s cousin is going through exactly this nightmare. His son is very sick, he is known to be the boy in the plastic bubble. Sebastian Luis, called Sebi is a beautiful boy with gray eyes, amazing smile, and only 10 months old. But unfortunately, he has SCID called also “bubble boy disease”, extremely rare and dramatic condition: he may be forced to live his life in a bubble.
Every day, every hour is for Sebi a fight to survive infections, because he was born with a dead immune system meaning that he has to live in sterile conditions or risks picking up a life-threatening infection.
He will have to go through chemotherapy to destroy what few cells he has left for immune system before the transplant …and after the transplant he will be extremely susceptible to any type of germs. If the transplant goes well he will start develop an immune system in 3 years, but he has to live in the right environment and constant and extreme medical care. Even so, still the chances are uncertain.
If absolutely everything goes well the first 3 years, the immune system will hopefully be functional at the age 12. But until that age, he will have to be protected, he can not come in contact with any germs. Sebi the bubble boy will have to live in a house completely sterile that costs a fortune.
This and the constant medical care is an economical challenge from day to day. The medical costs and other expenses for the bubble boy disease can be counted in the millions. But this is not the worst thing. Imagine how the parents feel the constant fear and uncertainty. They have another boy, 3 years old and he is robbed from his childhood as well.
Here are some lines from the blog the mom is posting on, she wrote her thoughts: “Yesterday I think I said wasn’t the best – My mom
saw him get sick once and I felt bad that she had to see it but she did well and did not cry. Then Enrique (Sebi’s father) saw a coughing fit. I always hope its just me who see it so other people that I love don’t have to see his suffering but it doesn’t always work out that way. I would still say his progress is promising.”
The parents live with hope from day to day. Every day that he does well brings happiness and joy to his family. “Sebastian had a great day today! Less coughing, no throw up AND…..he ate!!!! 3 oz. of Gerber baby food!!! He is definitely responding to his med. The doctor said his lungs/airways sound clear and that the mucus is more in his throat and sinuses.
I really think tomorrow will be a good day too and I am going to enjoy it completely. I’m not even going to think about the near future and what could or could not be until that time comes, I’m just going to embrace every happy moment because right now is all there is and it is wonderful.” said in the beginning of April Sebi’s mother.
Helping Sebi’s family will mean everything to them, So they will be able to support all the costs and purify their home. Sebi’s life depends on it.
SCID became widely known during the 1970′s and 80′s, when the world learned of David Vetter, a boy with X-linked SCID, who lived for 12 years in a plastic, germ-free bubble. In 1975, NASA designed a miniature space suit for then five-year old David, which briefly allowed him to explore the world outside the hospital. After just six excursions, a terrified David refused to wear the suit, afraid the germs in the outside world destroy him.