Prayer & Perspective

I decided to do a special post today to share the story of a two-year-old little boy, Luis Miguel, and his family. Miguel was diagnosed with microcephaly, a rare neurological condition in which his head is much smaller than normal due to a lack of brain development. I had the privilege of meeting this family when I went to the nearby city of Timon and have had them on my heart ever since. There is no possible way to convey with words the gravity of the challenges that this family faces but I am going to try anyways because I truly feel that God has given me this platform to share in order to offer people a new perspective through my experiences here.

Microcephaly presents itself in different levels of severity and does not yet have a cure. Luis Miguel’s case is incredibly severe, in which he has spasticity and cannot talk, eat, walk, or even hold his head up on his own. The only treatment options are to treat the side effects themselves through occupational therapy, early speech intervention, and other specialty procedures. In some cases, it is necessary to separate fused bones around the brain that are applying significant pressure, consequently keeping it from growing and developing. In Miguel’s case specifically, the current symptom his doctors are aiming to treat is spasticity (muscle contraction that manifests itself through exaggerated stiffness). Next week Miguel Luis will be undergoing a minimally invasive surgical procedure widely used around the world to treat spasticity caused by cerebral palsy and other illnesses. This surgery, known as a selective dorsal rhizotomy, involves a neurosurgeon accessing and isolating the sensory nerves connected to the spine that transfer the contraction messages to the affected muscles. These nerve roots coming out of the spine are then cut so that the contraction signals cannot be transmitted to the brain. Although the surgery is widely known and fairly common, any procedure involving the spine and brain is scary, especially when being done on a two-year old. However, both the mom and dad have conveyed to me that although they are afraid, they trust that God has Miguel in His hands. They have spoken about the Lord drawing their hearts close to His through their circumstances, just as it states in 2 Corinthians that His power is made perfect in our weakness. Just two weeks ago, Miguel’s parents decided to accept Jesus into their hearts and trust Him with their lives, making the commitment to take up their cross and follow Him daily. Though my brain does not have the capacity to understand how vast God’s love and provision is, He has tangibly demonstrated this through His faithfulness in drawing near to this family. The Lord just truly amazes me, in particular regarding the courage and peace He gives to His children during both hardship and prosperity.

Miguel’s family is constantly sacrificing their time, wants, and finances for his wellbeing. His mom (Claudia) takes care of him all day every day, and his dad (Fernando), 10-year-old brother (Marcos), aunt, and grandparents all help as much as possible. This puts pressure on Miguel’s father to provide for his family of four, while only being able to work in the afternoons, as they take Miguel to physical therapy four mornings a week. Additionally, they do not own a car and have to pay for an Uber to get to the hospital which is not sustainable long-term. The family used to travel on the dad’s motorcycle, but it recently got taken. The dad would drive while the mom held Miguel as tight as she could in her arms. Miguel has no head control and drivers here are insane, so the thirty-minute drive to the hospital is dangerous to say the least.

It should go without saying, but caring for their family comes much harder than anyone could imagine. Not to mention, the public healthcare here is gravely underfunded. This means that quality care, especially for rare conditions such as microcephaly, costs much more than the vast majority of the population are able to pay. To give you some perspective, Miguel’s medicine alone costs $200 ($R1.000) per month, and an average salary is around $400 per month. This then only leaves $200 to feed a family of four, pay for eight Uber rides every week to get him to and from therapy, and pay the bills. This isn’t even accounting for all the extra things Miguel needs on a monthly basis of which the list is too long to name. Needless to say, this family is surrounded by extreme hardship. Yet, somehow both the mom and dad are smiling and exuding God’s light every time I see them. I will forever be inspired by their strength. I feel sick when thinking about the contrast between their courage and my tendency to worry about trivial details and take things in my life for granted.

Every person’s struggles are valid and real; however, it is important to understand that basic necessities are left unmet every single day in millions of people’s lives around the world. This might be information that everyone is aware of, but these people are more than just a statistic. They are mothers, brothers, grandparents, and most importantly sons and daughters of God that we are each called to love. I pray that each person that reads this would consider that everything in this world is temporary. From emotions to illnesses to accolades to our lives themselves, with the only constant being our Creator. And further, that this would push us all to really contemplate the things that we find important on a daily basis.

Most importantly, if you are reading this and believe in the power of prayer, I could not more strongly urge you to lift this little boy up to the Lord in the weeks to come.