Please help my nephew, Marcelo Mugica, as we unite to raise money to aid him on his journey after brain surgery......
Marcelo's first few months were completely normal. He kept his condition a secret until around his fifth month when we first observed a subtle bowing spasm. As time passed, the spasms increased in frequency from about once a week to around two to three times a day. We also noticed that Marcelo was not interested in playing with toys, would rarely make any eye contact and that he was falling behind on some of his important milestones.
Upon bringing it to his pediatrician's attention, he referred us to a Pediatric Neurologist who within minutes of meeting Marcelo, requested that we hospitalize him immediately. After extensive tests and blood work, the doctors discovered that Marcelo had suffered an in-uteran stroke resulting in severe lesioning of the right side of his brain. As a result, Marcelo developed West Syndrome, or Infantile Spasms, which is an uncommon form of epilepsy. If left untreated, the resulting damage could have lasting effects on his cognitive and physical abilities.
Marcelo underwent an aggressive steroid treatment under the care of Dr. Ian Miller of Miami Children's Hospital, which has helped his condition considerably; however, it did not completely eradicate his seizures. They still occur on a daily basis which prohibit him from developing normally. After numerous visits to Miami Children's Hospital, and a second opinion at Children's Hospital Boston, it has been determined that Marcelo's best course of action is to undergo a Hemispherotomy. This procedure will consist of disconnecting the right side of his brain, thereby allowing his left side to function without interference. Drastic as it may seem, this procedure gives Marcelo the best chance of being seizure free and living a normal, healthy life.
On October 26th, Marcelo will undergo the Hemispherotomy. Immediately after, he must begin an intensive Physical, Speech and Occupational therapy regimen. These are neccesary in order to prevent paralysis on the left side of his body and to help him catch up to where he should be cognitively.
Since his diagnosis, my sister-in-law, Viviana, has had to put her career on hold to be Marcelo's full-time caretaker. He has had endless doctor appointments, has been on as many as 8 medications per day and is undergoing daily physical therapy. Their insurance company only covers thirty 1-hour sessions per year. After his surgery, Marcelo will need five 1-hour sessions per day for atleast the first 6 months. Each session costs $67 an hour and we are looking at over $50,000 out-of-pocket in medical expenses.
Everyone is always asking us what they can do to help Marcelo and our family. We have decided as a family that the best form of help is to donate whatever possible amount of money you are able to towards his medical expenses. No amount is too small. We also ask that you post his link on Facebook and hopefully through word of mouth, we can touch people's lives.
Marcelo's diagnosis has changed our lives forever. The unimaginable did happen to our family and it sure has been the greatest test of our strength. It has brought us all closer together and has been the greatest learning experience of our lives. Throughout this process our Superhero has never ceased to smile and has shown us that he does not want to give up. Marcelo has taught us to really understand what is important in life and we will always be grateful for him.
Please keep him in your prayers and thank you for all your love and support!!