We have created  this fund on behalf of our dear friends Holly and Renato and their beautiful baby Matías. They are facing a medical diagnosis for their son that will require daily attention and care. This has affected their daily lives in so many ways. We would like to share their story.

Matías’ Story (shared by Holly)

In December of 2020 we entered a season of uncertainty that I never imagined. We were busy getting ready to celebrate Matias' first Christmas and our biggest concern at the time was finding matching Christmas jammies for our new family of three. On December 1st at our four month check-up, I mentioned that Matías’ breathing was really fast. The doctor agreed and sent us to a cardiologist for an echo and a pulmonologist to rule anything out. Thankfully the cardiologist said his heart was perfect. Yay! Then the next day we went to see the pulmonologist and before we knew it we were admitted to the hospital for the next nine days. While in the hospital they ran SO many tests on Matías and he was so brave through them all. The pulmonologist admitted Matías to the hospital to do a sleep study with a pulse oximeter.  Matías endured more blood tests, a swallow study, X-rays, ct scan with contrast and bronchoscopy under sedation, sweat test for cystic fibrosis, tested for Covid three different times, viral labs, and genetic testing. Everything came back negative. The doctors could not figure out why our baby was having to breathe so hard and so fast and why he needed supplemental oxygen. We were sent home nine days later with 24/7 oxygen and a pulse oximeter and told to check in the next week with the pulmonologist. While it was encouraging that all of these tests came back negative, it also was disheartening because it was becoming more apparent that there was not a simple fix for our sweet little baby. Weeks and months went by and we found ourselves adjusting to a new normal of having our son connected to an oxygen tube 24/7 still with no answers as to why. Matias had repeated chest X-rays at the end of January and more blood tests in hopes of finding a clear diagnosis. The pulmonologist we worked with had never seen a case like Matías’.  He suspected he had one of the many types of childhood interstitial lung diseases,  but was not able to diagnose without a biopsy. We wanted to avoid a biopsy if at all possible. Matías was now six months old at this point. We reached out for second opinions and it was thought best to do a repeat CT hoping to get a clearer image. On February 19th we went to UNC Children’s Hospital in Chapel Hill. Thankfully this time we did not have to put him under sedation and without contrast. This CT was conclusive and we met with the doctor immediately afterwards. The CT showed “gray spots'' or “ground glass” in both of Matías’ lungs. This finding along with his other symptoms checked all the boxes for the rare interstitial lung disease Neuroendocrine Cell Hyperplasia of Infancy, or NEHI for short. A quick google search will tell you that there is not much knowledge about this rare disease, as it has fairly recently been given a name. NEHI falls under the category of Childhood Interstitial Lung Diseases. The doctor puts Matías on the middle of the scale of severity, while he does not have an extreme case, his condition is not mild either. He is to stay on 24/7 oxygen support for a long while. The doctor thinks more along the lines of five years. And then hopefully only night time oxygen until around ten years. That is not to say that Matías can’t recover faster! And that is what our prayer is now. A key factor in this is Matias’ growth. He needs to stay on his growth curve, which he has so far, but he is definitely skinny. We need to keep feeding him nutrient dense and high calorie foods along with breast milk. Good thing Matías loves avocados! It is also important that Matías stays healthy, because of his lungs, any kind of sickness or bug will be harder for him to get over. Right now his immune system is good, and we pray it stays that way and continues to get stronger.

The doctors have said that this is harder on the parents than the kids. We find ourselves in a mix of emotions. We feel thankfulness for the care that Matías is being given, the people surrounding us with support from far and near and the wonderful doctors treating Matías with such care.  At the same time we feel grief with the finality of a diagnosis, one that has our baby attached to a cord for the majority of his baby days and early childhood. We are still wrapping our heads around this and at the same time fighting to keep the truth in the forefront of our minds that God is able to do more than we could hope or imagine.

What Can We Do

As many of you know Renato and Holly well, you will appreciate that they are the last to ask for help. They live modestly and have selflessly lived a life of service to God.  They are the first to lend a helping hand, and we want to be there for them now.  Many of you have asked how to help; one of the best ways our communities and families can do so is to contribute financially to their many unforeseen medical costs, bills and especially peace of mind with their own day to day lives having been forced to change so abruptly.  Any amount is incredible and no sentiment is too small.

Words cannot express how much we admire how Holly and Renato are handling this challenging time in their life. They know that they will be strengthened, and grow more reliant on God in this trying season.

Thank you for your generosity and love.