My Brother

In the eighteenth chapter and the twenty fourth verse of the book of Proverbs the Holy Bible refers to a friend that sticks closer than a brother. The friend referenced here is Jesus. I would think that outside of Jesus our Ariella will not find too many more friends that will stick closer to her than her brother. Rachel and I thank God continuously for the Ella’s big brother. Charles is an amazing young man, so full of love and compassion. She is so smitten with her big brother and he is so in love with his little sister. It is a real joy to watch him and his sister together.

Charles was eager for his sister to get to a stage where they could actually play together. We recall having a conversation with him where we described the different stages of development; this was prior to Ella being born. In particular we really talked up what it would be like when the baby would eventually reach the place where she could crawl and roll around and laugh and how much fun they would have together. Well it quickly became evident that God had other plans for Ariella’s development and that He would be bringing her along at His own pace based on His time. And even when things looked their worst Charles never changed his character. He never questioned, he never doubted, he continued to hold God to His word and patiently and completely love his sister. He wanted her to be able to do things other babies her age could do, but he never took it out on her. And not once, not even for a moment did he display any signs of selfish adolescence. We wouldn’t have blamed, in fact we would have completely understood. Charles was the star of the show, for years he didn’t have to compete for our attention. And now not only did God bless him with a little sister, He blessed him with a sister that had some considerable obstacles to overcome and as such requires our full attention. Charles never changed; in fact he grew in maturity when it comes to being available to help with his sister’s care. We absolutely feel his absence when he is not with us. There is no doubt that his sister es mucho mejor cuando su hermano grande esta con ella.

I remember when Rachel and I first told Charles that we were pregnant, how excited he was. For the longest time he couldn’t decide if he wanted a little brother or a little sister. But ultimately it didn’t matter, from the very first moment he laid eyes on his sister they were both done for. He would forever be smitten with her and she him. And with all that this family has been through and everything specifically that Charles has had to deal with he still continues to excel in school. In fact our amazing young man is being honored in a few weeks at a special gala event hosted by the University of Connecticut’s Connecticut Writing Project (http://cwp.uconn.edu/publications/csw2013winners.php). Our amazing son’s school librarian submitted a story that Charles wrote earlier in the year to this special writing competition sponsored by UCONN each year. You can read more about the Connecticut Writing Project here (http://cwp.uconn.edu/about/overview.php). Charles’ story was submitted along with 1100 other entities from grades K-12 from public and private schools from across the state. From all those stories our son’s story was selected as one of seven winners from the fourth grade. This is a great honor and to say that we are proud of Charles is an understatement. Although the honor is a great one, what give me more pleasure is the amount of effort and discipline he invests in his work.

Charles has always been a good student, however what he has been learning and displaying more often is a commitment to hard work. It is that same resiliency that Ella has inherited from her brother that pushes her to get stronger and stronger every day and work past any false diagnosis that may exist. We could not have asked God for a better role model for Ella than her brother. Charles we love you so much,man, and thank God for you. You are a great young man, with a big heart, a strong work ethic and a commitment to Jesus Christ and his teachings that is unconventional. You make all of us better buddy. Te querimos!










One more protein chain

Today our little warrior took another big step in her development. About a month or so ago, you may recall we shared with you that she was starting to roll over, well look at what she learned to do today.


She did a complete log roll today for the first time. Our special miracle baby is now rolling completely over, not just on to her side, but she rolls over onto her stomach and than continues rolling onto her other side. Our God is an Awesome God, He reigns from Heaven above with Wisdom, Power and Love, Our God is an Awesome God!

Friday April 19, 2013

Now that's what I call progress, Ella eating her own foot
This week has been a great week for our little warrior. As many of you saw earlier in the week she really took to her bouncer. She continues to love being in the bouncer and it is so good for her development. We have even noticed that she seems to be managing her secretions much better as a result of the activity. While her swallow hasn't necessarily grown any stronger, she does overall appear to sounds less junky and her breathing doesn't seem to be as labored.


 This week also featured two more follow-up appointments with her medical team. Ariella was seen by her ear, nose and throat (ent) doctor as well as her neurologist. While both appointments went well and both doctors were impressed with her growth and development what is of particular note is the results of her neurology appointment. We met with the same doctor that gave us the initial diagnosis back in January that Ella was not going to survive much longer than a couple of days or weeks at most. This doctor is a brilliant man and we never bared any resentment for his diagnosis. This is also the same doctor that advocated on our behalf to get some of the baby's genetic testing covered. I mention all this because after watching the video of Ella jumping in her bouncer and seeing her roll around and sit up during the exam, he was left with no other option than to conclude; "she is clearly telling us that she does not have the most severe form of this disease". That is an exact quote. This is an amazing realization. Immediately Rachel jumped on it and asked him if he was willing to communicate that to the rest of Ella's team. This way we get everyone on the same page and we can stop thinking about her care in terms of survival and start thinking about more long term development and growth strategies. We praise Jesus for the great work He is doing in Ariella.

What if we showed this kind of compassion
What a powerful display of affection



Ella also got a special visit this week from her cousin Audriana. It was so cool to watch these two play together. Ella would not take her eyes off of Audi while she was awake and even when Ella was waking up from her afternoon nap and treatment, Audriana was there to greet her. It is so amazing to see Ella continue to progress. She really is a living miracle.

Also Ella wants to give her Grandmabuela a special Happy Birthday shout-out. Today is Grandmabuela's birthday and she came to spend the weekend with us. Thanks Buela, happy bday, we love you.

It's playtime for the cousins




Ella is still amazing

Rachel was inspired to set-up Ariella's bouncer this weekend, with the thought that it would be something different for her to see and do, but not much else. It had never occurred to us that she would do much in the bouncer, maybe hold herself upright for a bit; never in a thousand years did we ever think that our precious little warrior would be able to hold herself for long periods of time, never mind actually jump. Well shame on us for not giving God enough credit to something amazing. Instead of trying to explain it see for yourself.




There's only one thing left to say - GOD IS GOOD!

More from the fundraiser

More pictures from the fundraiser. Enjoy a series of Ella with her Grands...
Ella and Nana
Ella and Grandmabuela


Ella and Grandma


Ella and Poppy





























As promised

We wanted to share some pics from the fundraiser. Please send us the pics you took during the dinner if you were in attendance, iammtc837@gmail.com.











The end it movement

I promised that I would not use this vehicle to promote any personal agendas or political campaigns, however some things are too important not utilize every method at your disposal. According to most experts there are more people in slavery today than at any point in time in the history of mankind. This is a global epidemic that exists not only in places like the Philippines, Singapore and the Middle East, but right here in our own backyard throughout the US. In fact there are active investigations in the state of Connecticut where law-enforcement are pursuing human trafficking rings. Today I stand in solidarity with the end it movement not be quiet about this issue, but to speak up about human trafficking and all its machinations; to shine a light on it everywhere it exists. I know that Jesus cares for all his creation and does not want to see anyone lost; victim or perpetrator. Today I stand up and say human trafficking is not ok. Please join with me by drawing a red X on the back of your hand and tweeting the picture to @enditmovement or #enditmovement. We can do this people, God has given us the authority we must end slavery NOW!

We are Overwhelmed!

"Wow man this is amazing, I have been to corporate events that are not run as smoothly as this, especially with all the activities and participation, this is really great."

"Where did all these people come from?"

"Do you guys really know everyone here?'

"Have you seen the auction table there are a lot of great items over there."

"I am really impressed by all of this support."

"I am overwhelmed, that's all I can say."

Listed above are just a few samples from different individual's reactions to last night's fundraiser; the last one came from us. When we started this blog four months ago we did so with the intention of providing a single source of communication for our family and close friends to keep them abreast with what was happening with the baby. Truthfully this was the best and easiest way for us to update folks without having to have the same conversation twenty times a day. We never imagined the blog would grow to the place where individuals and organizations from across the country would visit it to see how Ella was doing. We certainly never dreamed it would gain so much momentum that even people we had never met would want to stand with us and support our little warrior's fight against Nemaline Myopathy. Last night we were overwhelmed by the display of love and support and investment in Ariella. Love came from everywhere, friends and family drove from out of state to be with us last night, our sister left her college campus in Florida and flew up to be with us last night., people we had never met who are not part of Ariella's team, came to support us last night. Thank you, thank you, thank you all.

Event planning team - (clockwise around the table: Jessie, Rachel, Lisa, Big Nilda aka Mima and Nilda)
From beginning to end last night was amazing, the room was filled with so much great energy. You could not deny the presence of God's Spirit, it was in everyone and everyone was in Him. It is a remarkable thing that one child could make a room full of people, many of whom had not met before last night and make us all feel connected. For a couple of hours we were all family, united, together and blessed. It made me proud to be human. In our lives we are inundated with a constant barrage of images and information that promote sex and violence and despair. Our news media jams one depressing story down our throat after another; the saddest part being most of it is accurate. Basketball coaches spewing hate and abuse at their players, mentally ill individuals committing the most heinous acts of violence imaginable, one global economic crisis after another, discord and dissension among our elected officials. It's enough to make you loose hope for the future of our species. Well if I was ever considering giving up on the human race, which I wasn't, but anyone else who might be, last night your hope would have been restored. The amount of effort and professionalism and talent and compassion and fun and hope and joy that was put into and came out of last night was nothing short of miraculous. I heard my wife and one of our friends quoting the third chapter of Malachi and the second half of the tenth verse - "if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it." God is faithful and true to His word. We were running out of room in the hall last night, the supporters just kept coming in. Eventually we had to add more tables and chairs to accommodate the crowd. Thank the Lord the church had extra.  

The hall just after set-up before anyone arrived, this place was eventually filled to almost standing room only
We promise to post more about last night and share lots of pictures and video from the evening. In fact if you could please e-mail the blog (iammtc837@gmail.com) any pictures or video you took of the event so that we can house them in our archive as well as post them to share with others that would be great. For now, once again we have to say a special thanks to the team that made this all happen. The picture of the dinner table with that group of amazingly talented ladies is what lead to an event hall of empty dinner tables pictured above that eventually become full of people to the point of overflow. Jessica, Lisa, Nilda and Mima; THANK YOU ALL SO VERY MUCH. What you have done for Ariella and our family goes beyond what words can express. And particular Jessie and Lisa, just know that It Takes Two Event Management is an amazing business model and I believe that last night was the start of something very special for you two as well. Don't give up on what you started. The idea for the pasta dinner was a seed that was planted in you both months ago and has been germinating ever since. Last night we saw the first fruits of that seed. God has blessed you both with amazing tenacity and commitment to see a project through to completion with professionalism and care. Because you were willing to invest so much in us, your returns will be greater.


It is our sincere hope for everyone that attended last night that you enjoyed yourself and most of all you came to place of genuine joy and peace realizing that your investment is in very good hands. We know there were many more of you that wanted to attend, but were unable to. Please know we understand and are grateful that you pray for and care about our daughter. And who knows what the future holds there may be other opportunities for you to participate.

May the love of our dear creator, the only living God, fill your hearts and homes, may you have comfort and joy and may you come to place of genuine intimacy and connection with Jesus Christ. Peace and God's blessings to you all.

Look at how far Ella's come...



Can you believe how little she used to be

Thank You In Advance

We are just a few hours away from Ariella's pasta dinner and the excitement is building with each minute that brings us closer to the start time. We are aware that there are many readers of this blog that will not be able to attend tonight's event. Please know that you are absolutely with us in our thoughts and in spirit. We can understand that distance and other circumstance make it difficult for you to be with us; we appreciate the fact that you desire to be with us tonight. For those of you  that are able to join us tonight thank you so much for taking time out of your precious weekend to come and spend some time with our family and support our little warrior. Weekends are in limited supply and from one busy family to another we understand how important it is to make the most of your weekends so thank you for spending time with us. We are very much looking forward to a great night, there will be live entertainment, several different movies featuring our baby and of course the amazing silent auction.  Tonight is going to be great and while there are many people that have pitched in to make tonight possible we have to say a special thank you to our event management team -

Lisa Golia | Nilda Havrilla | Jessica Rodriguez - Espejo

Without these three ladies tonight would have never made it out of the planing phase. They were responsible for soliciting most of the auction items, they acquired the facility, prepared the food, work with vendor who donated food, developed the bid sheets that describe the auction items and so much more. Lisa, Nilda and Jess; thank you in advance for an amazing night. You three are superstars and are so grateful that God has made you part of our lives. This could not have happened without you. God bless you and your families.


Happy Resurrection Sunday, March 31 2013

Ella and Naomi play together for the first time
Today we celebrate the resurrection of our Lord and Savior Jesus Christ and this year is particularly joyful because we also celebrate the new life that our beautiful Ariella lives each and every day. It is hard to believe that only a few months ago we were hours away from preparing to plan a funeral and today our baby sat quietly and attentively through our church service in the arms of her Godmother.

Even as we share this we need to be clear we have been painstakingly careful in the messages we communicate by means of this blog. This is an important vehicle for communicating our daughter's progress. We understand that there are a number of our readers that are chiefly interested in reading about Ella and may not be particularly interested in our expressions of faith. On the other hand, to know us and to know our daughter is to know that we don't live separate and apart from our faith. Faith is an indistinguishable component of our make up. One could go so far as to say it is written into our DNA.

We understand that our readers represent various points along the faith spectrum and we appreciate you taking some of your time to read about and take an interest in Ariella's progress and development. At the same time because we know what we know and have experienced what we have experienced we find it a difficult proposition indeed to talk about our baby and not mention the power of God working in her life.



However you chose to recognize today's most sacred occasion, if you celebrated it at all, we hope; rather we pray that the power of Christ that we have experienced first-hand in our lives touches your hearts and brings you to a place of closeness with your dear Creator. Jesus is alive today, he lives in our hearts, and because Jesus lives Ariella is alive today. Happy Resurrection Day