Roco Iñigo B. Suarez (6 months old) was rushed to the hospital on September 6, 2020 due to Aspiration Pneumonia that caused him to lose oxygen and almost close to being unconscious. We were very lucky to immediately rush him to the hospital nearest our home for first aid and proper oxygen was given to him until we were able to transfer him to a hospital that has a complete facility.
My son was born 2 weeks early which makes him a pre-mature baby. There were no signs of abnormalities whatsoever until he reached 6 weeks old. Signs of muscle weakness started to show from head to foot, he does very minimal movement to none at all. We consulted his Pediatrician and was advised to see a Neuro-Pedia Specialist as it might somehow be connected to a brain problem. We consulted a Neuro-Pedia and the initial diagnosis was a suspected Cerebral Palsy. But series of nerve and brain test procedures were done and results turned out all normal. His doctor then requested that he take a SMN1 laboratory test that would confirm a possible Genetic condition called Spinal Muscular Atrophy. This condition is an autosomal recessive neuromuscular disorder characterized by motor neuron degeneration leading to muscular atrophy with progressive paralysis. It typically begins in infancy or childhood years and affects about 1 in 11,000 babies. Roco is unable to move, his muscles cannot support the basic functions of his body. Thus, making it very difficult for him to swallow or even breath normally which caused him to contract Pneumonia.
Roco was taken to Intensive Care Unit last night. He developed a complication which is Acidic blood and caused an increase of Carbon Dioxide in his body. If this was not controlled, we will definitely lose him.
Right now, we are very thankful that we were able to save him from having a respiratory failure. I am grateful to all his Doctors and Nurses who were very much attentive with him.
Treating his pneumonia is just the start of his life battle. Once he recovers, he will undergo more series of tests to see the real condition of his Hypotonic case.
If he turns out positive to have Spinal Muscular Atrophy, this is the cost.
“SMA Type 1 is a life-limiting condition. Though it is not possible to accurately predict, for the majority of children (approximately 95%) life expectancy is less than 18 months. In general babies diagnosed within the first few weeks or months of life have a significantly shorter life expectancy.”
When we 1st found out the possibility of this genetic condition, we lost hope. Because genetic illness does not have any cure. Miracle is the only thing that can help my child. But the new Neuro-Pedia and Geneticist of my son gave us hope with the help of Science. A cure for SMA is being developed outside the Philippines and with the help of his doctors and their connections, there is a possibility for Roco to be treated. We will be exhausting all options available to save my son’s life if it turns out that he is positive for SMA.
My son is still in the Intensive Care Unit as his breathing is not yet stable and bacteria of pneumonia is still present. The entire process, from curing his pneumonia to doing the series of tests until the results come out is not going to be easy. It is going to be not just mentally and emotionally challenging but also financially as well especially that the case that my son has can only be detected in a facility outside our country and treatments that are needed.
Just this September 18, 2020, he had a surgery where they needed to insert a tracheostomy tube to help him better support his oxygen without the risk of infection and a gastrostomy tube in his stomach for his feeding.
We are now running out of funds from our savings as the hospital bills keeps on piling up everyday (more than 100k increase every 3 days). They are still yet to add the bill from the surgery. And he has a total of 7 Doctors who needs to get paid with their Professional Fees that will be added in his hospital bill. Once he gets discharged from the hospital, he will also be needing his own equipment at home such as Ventilator Machine and Suction Machine to sustain his oxygen and breathing until such that his treatment for SMA Starts. Once his muscles are already developed enough to support his respiratory, that’s the only time that the 2 tubes can be remove. But for now, it’s not going to be an easy process but we believe that my son is a fighter and he will recover.
It’s not going to be just mentally and emotionally challenging and stressful but also financially. Which is why we are here, humbly knocking thru your hearts to add my son to your prayers and to ask for financial assistance.
Any amount will be a big help to raise funds for all the procedures that is needed by my son and to cover the hospital bills that will be out of our financial capacity.
Thank you and God Bless you all!