Sunday, September 14, 2008

Let's Help Hannah! One Year Old Needs Portable Ventilator

There are stories that tug at your heart and remind you of certain points in your life’s journey.

Once upon a time, I was a mother with a child who was born with a congenital heart defect. Migi left this world to return to his true home ten years ago, and that episode changed my life, our lives as a family forever. I remember how, when he was just a baby, I would hardly leave the room in the first three months of his life, anxious that the moment I left, he would stop breathing. All throughout his toddler years, we would make sure that someone was with him 24/7.

When I heard about Hannah Ysabelle Cordoviz and the efforts of her parents Carlo and Joan to help keep her alive, I knew I had to do something to help get their story out. Hannah was born on August 14, 2007 with a very rare condition called Congenital Central Hypoventilation Syndrome (CCHS). It is a rare and lifetime condition characterized by one's brain failing to signal the body to breathe. In Hannah's case, her brain fails to do so when she falls asleep. To keep her breathing, her parents need to hook her to a mechanical ventilator/respirator, which connects to her through a tracheostomy tube found in an opening in her neck.

In the Philippines, there are only three known cases of CCHS, including Hannah. The eldest among them is a three-year old girl.

The CCHS Family Network website says that the Key to the CCHS patient’s longevity is informed medical supervision by medical professionals who also work to support the family in optimizing the home healthcare and school (or other) settings. At minimum, this requires nighttime nursing support in the home for the infant and young child, along with some respite support for the parents and caregivers. The U.S. based study cited above found that the majority of CCHS families’ medical costs were covered by government and/or private insurance programs.

Unfortunately, in our country, congenital defects such as CCHS is not covered by healthcare insurance at all and so you can imagine the burden of the cost Hannah’s illness has placed on her parents. I had the privilege of speaking to Joann and she tells me that on the average, the family has to spend 150,000 pesos a month to sustain Hannah’s care. This already includes monthly payments to the hospital where Hannah was confined for eight months – from September 2007 until May 2008. But what parent will not do everything to keep their child alive?

A huge chunk of the monthly expense comes from renting a ventilator which costs the couple 25,000 pesos a month. “The money we have is money we already owe family, relatives and friends who have helped us since Hannah was born,” Joann and Carlo tell me. Both of them have had to quit their jobs to take care of Hannah who requires full-time care. There is a private nurse who relieves them and helps them out when they need to rest and her salary is factored into the cost. “It is our dream to buy Hannah her own portable ventilator, which she can use for so many years ahead. This portable ventilator will also allow us to bring Hannah outside the confines of our house: to the park maybe, to church, or even to a nearby fast food restaurant. It does pain us to know that we're not able to have Hannah see the same sights, hear the same sounds, and experience the same things as other babies of her age do,” the couple say. Joann tells me that a portable ventilator is crucial to Hannah’s survival and it will cost them 750,000 pesos to purchase one. With debts piling up month after month, the ventilator seems to be a pipe dream but the Cordoviz couple remains strong in their faith. “God provides and He has taken us this far,” Joann says.

To help in their fund-raising efforts, they have started a home business and built a website called “Rosaries for Hannah” – Carlo and Joann make and sell lovely rosary bracelets as a means of raising funds to buy Hannah her much needed ventilator. If you would like to learn moirĂ© about Hannah, do visit their beautiful website, if your heart is moved to help out this couple, please call Joann at 0915-3111641 or email her at

Tara Update

Tara Santelices, the young woman who survived a hold-up in a jeepney last August 9, continues to lie in a coma at The Medical City. The good news is she has begun to open her right eye (the left is totally damaged) and yawns occasionally. Her mother told me yesterday that Tara has also started to move her hands. These movements were not expected at all, considering the extent of her wounds (fragments of a bullet remain lodged in her skull). The President paid her a private visit late last week and pledged to look into her case. As of this writing, the case had been brought to the NBI and a new witness has surfaced. We continue to pray for Tara and for more miracles to come her way.