Sophie

Hello friends, my name is Sophia Yzobelle Delgado, my mom and dad calls me Sophie. I was born on September 25, 2007. Like any other babies, I was born physically “normal,” my dad told me that I was the most beautiful baby ever born when he saw me first time on my 4th hour of life. He thought that I was just as healthy as the other babies who were born on the same day at Lourdes Hospital,…a healthy baby girl who breathed normally and eager to take on the world, along with all the hopes and dreams that my parents have for me – until my 18th hour of existence, when I was about to be transferred to my mom’s room from the nursery, the doctors saw that something was wrong with me. My mom, who was eagerly waiting with the excitement to see me for the first time was so depressed when I didn’t, come to her room as scheduled. My journey to a life, that they say is very challenging, unlike other babies, begins.
On my 18th hour of life, the doctors inserted two tubes on my mouth, one was so long that it reaches my stomach, they say it’s a feeding tube, and maybe they didn’t notice that the other one is shorter that it stocked on my chest and puts air and pressure to my lungs, they call it endo-tracheal tube. Well, maybe this is really the way it is after babies came out of their mom’s womb. I thought, I would prefer the comfort inside my mom’s tummy, but since my dad said I was ready to go out, then I should learn to find comfort with this tubes designed for us, babies. But I was wondering why my mom cried so hard when we saw each other the first time. My dad always tells me when I was still inside that they will be very happy to see me, but I was so disappointed that my mom was not so happy to see me, so I cried too. That time I want to ask my mommy why she was crying, but no voice was coming out of me, it’s because of this tubes that I have on my throat. Then, the doctors came and told us that I have pneumonia and I need a machine to help me breathe because I couldn’t do that on my own yet. So I learned that I am sick that’s why I have these tubes. They told me that after 14 days all of these will be taken out and I will breathe on my own, so I assured mom and dad that everything is going to be okay. And so on the 13th day they tried to take my respiratory assistance, and I felt better, it was more comfortable without those, I can cry very loud as much as I want, and I can move my head… wow, I like it much, then when I was tired of playing, I felt so sleepy….
The moment I wake up, I was in pain. I was looking for my mom and dad. But there with me were the doctors and the tubes…those long tubes again, and they were inside me again. I was asking them to take it out and telling them “I bet my mom and dad will be very furious with you if they see this again, they waited so long for me to be taken home”. “HOME”… I was wondering what kind of place is that; it was so strange for me. They told me it would be nice to be home where I can play, sing, eat and sleep with my mom and dad.
Many hours past, it was so long that I can’t count it anymore, I remained in a warm box made of glass. I do nothing, I don’t want to move. It was so painful to move! I just waited for each time that my mom and dad would visit me to say how much they love me, to teach me to pray, to sing and to tell short stories. They told me I have to undergo some procedures, and they assure me that I will be okay because I am a strong baby. I have had a series of seizures, and countless hospital procedures. But still, the doctors can’t tell what’s wrong with me. After several tests here, and a DNA test through my blood sample sent in Paris, France, my diagnosis turned out to be what is called “Haddad Syndrome” (“Congenital Central Hypoventilation Syndrome (CCHS)” with ( “Hirschprung’s Disease”-difficulty in defacation ). It is otherwise known as “Ondine’s Curse.” - a condition that requires a lifetime of mechanical ventilation. So there it goes, my doctors say that my inability to breathe is untreatable and I will be dependent to a mechanical respiratory assistance for a LIFETIME. That must be long, so long the reason why my parents can’t stop crying. So long that it broke moms and dad’s heart, maybe longer than the time I stayed in the Hospital, which is 11 months. They say there are only approximately 200 of us worldwide who have this condition, and we are 3 here in the Philippines, the other two, Ate Nikki-3 yrs old and Ate Hannah-2 months older than me, are as pretty, as strong, as angelic as me… And so I underwent two surgical operations, a "tracheostomy" -a hole was put on my neck to insert a tube connecting to my lungs to hook in with a ventilator; and "colostomy" -my colon was cut and placed outside my tummy
My parents, whom my ninongs and ninangs call Cris and Aicel, are not giving up on me. They are very strong, and when I grow up, I want to be like them too. I want to show them my appreciation now, by giving them a smile, and I want to say “mommy” and “daddy,” but this condition is making it difficult for me.
Like you, my parents want me to go out and play with other kids, go to school, sing songs, and enjoy life. They are pulling out all the stops, so that very soon, I can be on my feet and running around – and I can’t wait to do so.
My parents are doing all they possibly can to provide for the things that I need now, but the amount is way greater than what they could possibly make. This is why I come to you now, to seek for your kind help so that I can keep living everyday, and that I may overcome my inability to have full control of my breathing.
Your kind heart will help me make it through another day, and every time I wake up in the morning, I will thank God for the blessing that you are to me and my parents. And one thing I can promise you is that I will be very strong to fight this disease. I would like to live a life that is as close to normal as possible, and I want to show the world that with determination, faith, and love, nothing is impossible.
Thank you for taking time to view my page, and it is my hope that you would include me in your prayers, as I hold on to life, and like you, live it to the fullest.
Love and prayers,
Sophie

Please help my parents raise funds for me to breathe one more day.
For love gifts, please call or send a message to 09282644569
or deposit to:
Security Bank
Account Name: Lucrecio Delgado Jr. (Cris)
Savings Account #: 0332-177790-497

Sophie will be in our Hearts Forever

Link

Previous blog entries:
Nov 6	-	Our dear Baby Sophie on her journey back home
Jul 4	-	A Show for a Cause
Feb 17	-	Sophie's strength