repost from Kcat Yarza
Calling all families, friends and running enthusiasts! It’s time to run, have fun and celebrate with us the birthdays of Julia and Vince through a FUN RUN called RARE RUN ala EH! on Dec 18, 2010.This is a special event that aims to raise funds for the benefit of kids with rare disorders like Vince and Julia. Proceeds will go to the Philippine Society for Orphan Disorders, Inc (PSOD) and Breathe Initiative (BI) For more information about PSOD and BI please click on the links below
.If we are going to bring HOPE and HELP to families living with RARE DISORDERS…We need your help.
A Compressor For Aiah
Aiah De Guzman, 2 years old, who suffers from Interstitial Lung Disease is currently confined at the ICU of PCMC (Philippine Children’s Medical Center). Her doctors have already adviced that she be brought home at the soonest possible time to decrease the risk of infections. She underwent a very sensitive operation last May 28, 2010 for the removal of a bullae from her lung. After the operation, she had a serious lung infection that almost debilitated her. Through God’s grace and other people’s help, Aiah seems to have survived all of these ordeals. She is currently awake and active although she is still hooked to a ventilator 24/7 .
How can we help this little fighter? How can we give her that chance at life?
Her home care will take a lot of preparation. Previously, her home care only consists of cleaning her tracheostomy tube, maintaining her on oxygen and feeding her though her nasogastric tube. Now her needs are more numerous since she is to be ventilated 24/7 via her trach tube. This is a rough estimate of the things she will be needing for her home care and a rough estimate of the cost:
1. Ventilator (for a 7kgs patient, pressure controlled) – at least Php 800/day rental, Php 24,000/month
2. Compressor for the ventilator (supplies compressed air to a pressure controlled ventilator) – Php 5000-7000/month rental
3. Oxygen Tanks – Php 500/refill of 1 big tank, she may need at least 2 tanks per day
4. Pulse Oximeter (used to monitor her oxygen saturation levels)
This list excludes her other medical supplies.
A refurbished medical compressor can be purchased at a price less than Php 10,000 (see equipment listing at dotmed.com) to eliminate the cost of 5k-7k monthly rental. We need your help in this endeavor. Every little help counts. Please contact us for your donations or if you have a working medical compressor to donate.
Let us give Aiah her chance at life. Through your donations, you only not give Aiah this chance but you give her and her family HOPE as well.
Breathe Hope: Help Jon Angelo Viado Breathe
Jon Angelo Viado is a 2 year old boy who’s suffering from a disease called Hypoxic Ischemic Encepalopathy (HIE). He’s on a mechanical ventilator 24/7.
I came to know about Jon through Carlo, the co-founder of our humble Breathe Initiative project. Carlo helped conceptualize and create the Breathe Hope bracelets now being sold in order to help raise funds for Jon’s medical needs, specifically his own mechanical ventilator.
Visit Jon’s blog to find out more about Breathe Hope. Please go out and buy a bracelet or two. If you’re not into bracelets just go ahead and donate some money. I’m sure Jon will appreciate any help you can extend. All the details
A little help can make a difference………..