|My name is Janina Perianne M. Chupungco and I was born last
October 16th 2009 with Apert Syndrome. My family and I are from the
My parents initially wanted me to have the same birth date as my
dad’s (October 23) but my mom’s OB said that they needed to chose an
earlier date. So they chose October 16th, the feast of St. Gerard
Majella - the patron for expectant mothers. Incidentally, the 16th
was also the feast day of Margaret Mary (of the Sacred Heart).
I was named Janina Perianne (to follow the JP initials that my
older brother or “kuya” has. J for my dad and P for my mom). Janina
also has the same meaning as my brother’s name (Nathan) which means
"God's gift" and my parents felt that Perianne was a suitable match
I was born via C-Section. During the procedure the doctors had a
difficult time getting me out of my mommy’s tummy because my head
appeared to be too big. After I got out, my mom’s doctor whispered
to her that there seemed to be a little problem because my head was
quite bigger than normal and that my hands and feet were fused.
Later on, the doctors explained to my parents that it seemed I
had Apert Syndrome but since the doctors present knew very little
about it, they could not give my parents very much information. My
parents were distraught but with the outpouring of support from our
family and friends, they were able to overcome all their fears and
concerns. Afterwards, several doctors met with my parents and they
explained the whole Syndrome to them and assured them that although
plenty of surgery would be needed, they could rest assured that I
was going to survive. I stayed in the ICU for a total of one week
while the doctors did tests on me to make sure that everything else
was okay. I was discharged from the hospital on my daddy’s birthday
– which was a perfect birthday gift for him. Things started looking
better for me since then.
I will soon have my MRI after which the doctors will most likely
map out the schedule for whatever surgeries that I may need. Apart
from the physical differences, I am no different from my kuya. The
doctors say I have some developmental delays but with the help of an
Occupational Therapist and my family members, we are working hard on
I love being with my kuya and he in turn loves me to bits. Many
times, he can’t help but give me so many kisses that it gets to a
point where I get cranky because he keeps kissing me and won’t stop.
I guess that’s how he expresses how happy he is to have me for a
sister. I am exclusively breastfed and I like to drink lots of milk
– it probably shows because my cheeks are all puffy and my relatives
always like to pinch it whenever they see me.
I know it’ll be a tough road ahead for me but my family is with
me on this so I know everything will be okay. They say that I was
given to my parents because God knew that they had enough faith to
carry them through. My parents likewise believe that “If God will
lead you to it, He will lead you through it.” So there.
Thank you for reading my story and I promise to keep you posted
now and then. For the meantime, please pray for me and my family
that we would be given the grace and the means to overcome all the
challenges that we would be facing. Thank you again and God bless!