One of the common conditions that children with Down syndrome have is heart issues. Even my little Z has been diagnosed to have ASD or Atrial Septal Defect. You can read more about it here.
His last check up with a pediatric cardiologist was last year wherein it was found that Z still has a small hole in his heart. Though no medication was given, he was to have another cardiologist consult a year after to check if the hole will close on its own. I was not able to schedule Z for his check up this month but we should be able to visit the good doctor next month.
I am grateful that Z didn’t need surgery or anything else to fix his heart. And I am hopeful that the hole has now closed, too. But there are cases wherein babies with Ds need to have heart surgery the soonest time possible so as to avoid further complications along the way.
Talking with other parents of children with Down syndrome, I have learned that there are babies and toddlers out there that are in need of immediate financial assistance due to urgent need to undergo surgery to correct the heart problem of their kids. Here are some of their stories:
This is Carl Angelo Cristobal, 2 years old. He has Tetralogy of Fallot and is scheduled for open heart surgery by September or October of this year. He is currently on medication to make the veins in the heart thinner which would make it safer for him during surgery.
This is Ashley Oreiro, 1 year old and has been diagnosed to have PDA or Patent Ductus Arteriosus. Doctors suggested for open heart surgery at PGH this coming August.
This is Johnrey Bonaobra, 1 month old. from Bataan. He has an imperforate anus, with PDA & PFO or Patent Foramen Ovale. He has already undergone 2 FAILED operations for colostomy. Has has gone through a third operation on July 23, 2016, and is currently in ICU for close monitoring and observation. As of date, Johnrey has already gone through his third colostomy but already out of immediate danger. He is still confined and under observation.
Jaden Lopez, 9 months old, has AVSD or Atrioventricular Septal Defect and has undergone cardiac catheterization but still on oxygen because of hypertension. Given that the case is high risk, doctors are still assessing if they will proceed with surgery.
Cardio consults plus lab tests are expensive. Imagine the cost for surgery as well as maintenance medicines afterwards. Depending on the hospital, 2D-echo test would cost around Php3,000 to almost Php 7,000 already. There are a whole lot more tests that these kids go through and it is draining emotionally, physically, spiritually and financially.
These stories really break my heart. And it has broken the hearts of the other parents in our Facebook chat group. And these stories have been the trigger to create Li’l Brave Hearts.
Li’l Brave Hearts is a store created by several parents of kids with Down syndrome to raise funds to help finance the initial hospital downpayment for the surgeries of these kids as well as to purchase immediate medication required. The idea to come up with a fundraiser came from one of the mommies, which got the ball rolling. A few other parents followed suit, providing their time, effort and resources to fund the project.
As of date, the store was able to raise funds which were used to purchase medicines for the recipients as well as other medical expenses needed. We still have a long way to go to raise more funds to be able to give these wonderful warriors, as well as a lot of other children who are in need of medical attention, a chance to live a comfortable life.
Should you, my readers, want to purchase T-shirts to support this cause, please do like the page and send them a message. Each shirt cost Php 450 each. The sale goes to the funds for medical needs of these kids. You may contact the following for more details:
Sheila Ann Gimeno
Donations are also accepted and should you wish to donate financially, please contact Sheila Ann or Sheryl on how to proceed.
Also, don’t forget to visit the Li’l Brave Hearts’ Facebook page for updates on these little warriors.
Note: photos posted are used with permission from the parents.