In order to sustain Hannah's (super expensive) medical needs, they put up an online store and sell rosary bracelets which are made by Ate Joan & Kuya Carlo..
Hannah's Letter
by Maria Kathrina Lopez Yarza
September 28, 2010
Two years back, I saw this link about a sick baby girl, Hannah Ysabelle. I was so touched when I read her condition and her parents’ courage and strength to help their little angel. I met her parents, Kuya Carlo and Ate Joan, through the net and from then on, our friendship started.
CCHS is a rare, lifetime disorder of the autonomic nervous system dysregulation. The autonomic nervous system is the portion of the nervous system that controls or regulates certain involuntary body functions including heart rate, blood pressure, temperature regulation, breathing, bowel and bladder control, and more. This syndrome occurs only in about one in every one million newborns.
In Hannah’s case, her brain fails to signal her body to breathe whenever she falls asleep. In order for her to keep breathing during sleeping, she is being hooked to a mechanical ventilation/respirator that connects to her through a tracheostomy tube found in an opening in her neck.
Hannah used to stay in the hospital since birth, and through the tremendous kindness, compassion, and generosity of people around her, she finally went home nine months later.
It was a difficult situation in their family, they were fearful for Hannah, but then, they found themselves praying their hardest and leapt that leap of faith.
FUNDRAISING
In order to raise funds for Hannah’s own portable ventilator, sustain her medical needs, and settle Hannah’s hospital debts, Carlo and Joan decided to sell rosaries and raise funds for Hannah. They set-up an online store: hannahysabelle.multiply.com, and started making and selling rosaries. They decided on having rosaries as their merchandise in order to spread their mission and devotion to the powerful intercession of the Immaculate Heart of Mama Mary to everyone.
A lot of people from different countries and all walks of life helped — from students to executives, from high chairs to wheelchairs, from a physical therapist in Atlanta to a firefighter in Cubao, from a true modern-day Ninoy, to an angel on earth.
In January 24, 2009 their family’s dream for Hannah finally became a reality. With everyone’s love and support, Hannah now has her own portable mechanical ventilator! Hannah can now get out of the confines of their home to play and enjoy the outdoors like other kids her age.
Last August 14, 2010, Hannah celebrated her second birthday with a simple salu-salo, but it was an extraordinary one for her family. It was the very first time they brought Hannah to church and attended mass as a family. It was a fulfilled birthday wish for Hannah.
Let us help Hannah continue to breathe and watch her grow. Visit her website http://hannahysabelle.multiply.com/or e-mail thru zivodrock@gmail.com.
***
Dear Friends,
Hi! I am baby Hannah Ysabelle. I was born on August 14, 2007, so I am exactly two months old now. I can do a lot of things that make my Daddy Carlo and my Mommy Joan very happy. I can move my arms and legs now. I can also hear the sweet voices of my mom and dad calling my name. Oh, and I drink a lot of milk now, though sometimes not the usual way. I also get tickled everytime my dad touches the soles of my feet. I smile whenever he does this. Mom and dad doubly smile when I smile. Picture nga ng picture! Dami ko na ngang photos di naman ako celebrity!
Really, I can do a lot of things now, EXCEPT that I can hardly breathe when I’m awake, and I don’t breathe at all when I’m asleep. You know why? The doctors said I have congenital central hypoventilation syndrome (CCHS). This means that the nerve center that is supposed to make me breathe is not functioning now. The doctors had to cut a hole on my throat, put in a tracheostomy tube and attach it to a respirator to keep me breathing. I also have a feeding tube through my mouth, off and on, because I can’t swallow well sometimes. I feel so uncomfortable with all these tubes attached to my body. And I can’t help crying out in pain everytime the nurses suction my tubes to clear my passages.
The doctors said this syndrome occurs only in about one out of every one million newborns. This means God gave normal, healthy breathing to 999,999 other babies, but not to me. Why? I don’t know!
Good girl naman po ako and my parents are also very kind people. You know, everytime I look around in the nursery and see the other normal babies without any tube attached to them, the more I feel the pain and loneliness of being the “one” in this statistic. I have been in the neonatal ICU’s of two hospitals almost since birth. I’m supposed to bring joy and hope to my parents. Instead, I sometimes feel the anguish and grief in their hearts.
I thank God for the life He gave me. I know He loves me so much, but I also want to have a normal, healthy life. I want to feel the warm hugs and kisses of my mom – just like other babies. I don’t know how much more pain my parents and I can endure.
Please pray for me. Please pray that God will finally give me the complete healing and the healthy lungs that I need, sana before Christmas. I want to go home na! You know what, if God completely heals me, I’ll be a Pink Sister when I grow up. Promise!
God bless you all!
Asking for your prayers,
Hannah Ysabelle S. Cordoviz
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