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- Marcelo has come a LONG way!!!!!!November 7th, 2011
Hello friends & family,
Mark & Viviana have been wanting to reach out to all of you with an update. Over the weekend, they were able to sit down and put the letter below together for…
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Please help my nephew, Marcelo Mugica, as we unite to raise money to aid him on his journey after brain surgery......
This is the story of our super hero Marcelo Antonio. On October 18, 2010, Marcelo came into our lives a little ahead of schedule. He was born into the world weighing in at a mere 4 pounds and 7 ounces. The doctors at the hospital assessed Marcelo's condition and deemed him a normal, healthy, baby boy. Despite his prematurity and low birth weight, Marcelo proved resilient. Little did we know, it was not even the first obstacle that he would have to overcome.
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!!
Marcelo Mugica updates.
Marcelo has come a LONG way!!!!!!
November 7th, 2011
Hello friends & family,
Mark & Viviana have been wanting to reach out to all of you with an update. Over the weekend, they were able to sit down and put the letter below together for all of you. Please take a moment to read it:
So, today makes 12 days since the surgery and even though Marcelo is recovering extremely well, it has not come without its series of challenges. Given the nature of the procedure, Marcelo did experience considerable amounts of pain and swelling during his first week. Even though it was expected, it was still very difficult to experience. Luckily, the staff at Miami Children’s Hospital did a wonderful job of easing Marcelo’s pain and quelling our anxiety. We also had plenty of support from our family and friends who in their own ways helped us administer the medicine Marcelo needed most of all: TLC. After 6 long days and stormy nights, day 7 greeted us with a much sunnier, smiling Marcelo. We knew then, that it was time to go home.
Since our return home last Tuesday, Marcelo’s recovery has kicked into high gear. Aside from feeling little pain, he has very little swelling and his spirits remain very high. Nonetheless, in his current condition, he is very vulnerable to infection and we are doing everything possible to keep him healthy. Despite all of our efforts, Marcelo, has been battling a stomach virus that even required a trip to the Emergency Room to prevent dehydration.
Aside from the challenges we expected and the hiccup, we are extremely pleased with what we have observed from Marcelo so far. Although we will not know if Marcelo is truly seizure free for quite some time, he has a look in his eye that we have never seen before and seems more alert and lucid to us than ever. Even more amazing, Marcelo has shown absolutely no signs of regression in his cognitive or motor skills and even has sensation in all of his extremities. Needless to say, this proves very encouraging as far as what he will be able to accomplish moving forward.
Wasting no time at all, Marcelo will begin physical and occupational therapy today. Through the guidance of Marcelo’s doctor’s and physical therapy team, we will be easing Marcelo into his full therapy regimen with 3 hours of therapy per day. We know that this will be a long, arduous process, that will require persistence and commitment for many years to come, but Viviana and I are very excited about the journey that lies ahead. We are optimistic about Marcelo’s future because thanks to your generosity, Marcelo will be able to receive the highest level of care, within the most critical window of his rehabilitation. We thank you all once more for your support , your prayers and your words of inspiration and look forward to updating you further on Marcelo’s progress. We know that he will continue to make you proud!
Mark, Viviana and Marcelo
OUR HERO :)
October 28th, 2011
Hello Friends & Family,
I apologize for the delay in sending an update. As you know, this week has been a little intense for us. I am writing on behalf of Mark & Viviana, as they have expressed so many times how they want to reach out to everyone and say Thank you to any one they may have missed.
So I decided, since they are day and night in the hospital, that I would just reach out with a quick update on Marcelo's status. Many of you already know, the surgery was a complete success. He has made amazing strides in the last 48 hours. He was in PICU (Pediatric Intensive Care Unit) for about 24 hours. Last night, he was transferred over to a regular room where he is recovering from the surgery. Naturally, he is fussy and in alot of pain, but it is being remedied with baby motrim and occasional doses of Morphine. He is an amazing little boy and truly taking all of this like a little champ!!!! The strength and will he has demonstrated is beyond words.....
I just wanted to update everyone, in case you are not on Facebook. Overall, he is recovering and doing well considering the circumstances. We appreciate all the love and support!!!! We know that this has all been so much easier on all of us because of all of you guys and all the love & support you have all demonstrated. We are eternally grateful!!
Stay Tuned for more updates....
Love Always,
Gladys, Mark & Vivi
(And OFCOURSE- MARCELO!!!!)
God Bless You all....
OUR HERO :)
October 28th, 2011
Hello Friends & Family, I apologize for the delay in sending an update. As you know, this week has been a little intense for us. I am writing on behalf of Mark & Viviana, as they have expressed so many times how they want to reach out to everyone and say Thank you to any one they may have missed. So I decided, since they are day and night in the hospital, that I would just reach out with a quick update on Marcelo's status. Many of you already know, the surgery was a complete success. He has made amazing strides in the last 48 hours. He was in PICU (Pediatric Intensive Care Unit) for about 24 hours. Last night, he was transferred over to a regular room where he is recovering from the surgery. Naturally, he is fussy and in alot of pain, but it is being remedied with baby motrim and occasional doses of Morphine. He is an amazing little boy and truly taking all of this like a little champ!!!! The strength and will he has demonstrated is beyond words..... I just wanted to update everyone, in case you are not on Facebook. Overall, he is recovering and doing well considering the circumstances. We appreciate all the love and support!!!! We know that this has all been so much easier on all of us because of all of you guys and all the love & support you have all demonstrated. We are eternally grateful!! Stay Tuned for more updates.... Love Always, Gladys, Mark & Vivi (And OFCOURSE- MARCELO!!!!) God Bless You all....
Marcelo Mugica Donors.
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ABUELA FRANCES & ABUELO DOMINGO gave $2,000.00October 20th, 2011
"Marcelo, you are in our daily thoughts and prayers!!!! God Bless You my little angel!!! I know deep down in my heart you will come out of this surgery like a champion!! Keep smiling!! Vivi and Mark keep strong and God Bless you both!!!! Love Mami, Abuela and Domingo!!"
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Oscar, Isa and Lucas Arellano gave $1,500.00October 18th, 2011
"Happy Birthday little Marcelo! We love you!"
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Rene y Odairis Batle gave $1,000.00October 20th, 2011
"Fuerza y Fe, que todo va a salir bien. Bendiciones para Marcelo."
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Tia Gee :) gave $1,000.00October 16th, 2011
"I love you baby :) You inspire me like no other. You WILL get through this."
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Anonymous gave hiddenNovember 16th, 2011
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Maritsa Santana-Ruiz & FAM gave hiddenNovember 16th, 2011
"God Bless you Marcelito!!"
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Janelys & Tony gave $50.00November 16th, 2011
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Armando gave $50.00November 16th, 2011
Hugs for Marcelo Mugica.