Sunday, January 30, 2011
Thursday, January 20, 2011
through the smile and the heart of a little boy!
Again I was reminded of God's faithfulness to me and to our family this past week. It seems God continues to use my little grandson Jayden to teach and remind me and to point me back to Himself. We kept Jayden and Brooklyn over night on Monday. On Tuesday afternoon Ken went to pick Jayden up from his bus stop. He usually comes home around 3:00. So by 3:15 and he still wasn't home, Ken called me and we both began to stress out a bit. So I began to make phone calls to the school and found no answer. So when 3:30 came and still no Jayden, the mother bear in me and the father bear in Ken came out. I decided to drive to the school to get some answers. When no one answered the door, I knocked and pounded until someone came. I found out that Jayden's bus was hit by a car and the police were called. Fortuneately, no one was hurt. They had sent another bus to pick up the children and they would be to their bus stops momentarily. So by 4:00 the bus finally came. But in that hour, we were filled with much uncertainty, we worried and wondered and our minds obviously went in a thousand different directions. What happened to our little boy! I was worried than that Jayden would be extremely traumatized by the situation, by the police cars, the lights, and then the transfer to another bus. But in Jayden style, he came off the bus smiling and singing the Bubba song. Not a care in the world.
What a gift he gave to me, to us in that moment. Even though he couldn't speak words, his heart spoke it all. He said "Ama and Bubba you didn't have to worry about me. God is in charge of my life. He's is protecting me and my heart. I'm ok." What peace flooded my soul in that moment! What a gift Jayden you are to our family! I am the one blessed. I'm learning to take moments and let God use them to teach me and remind me of His faithfulness, His grace and His love. To remind me that it's not me who is in charge but it is He who is holding us and often cradling us in His hands. He is in charge of all our starts and our stops. Thank you Jayden for your winning smile, your big heart, your persistence in teaching me that God is bigger than this life. You're right Jayden, He is in charge! Greater is he that is in me than he that is in the world !
"No pit is so deep that He is not deeper still! ~ Corrie Ten Boom
Wednesday, January 19, 2011
Just a Reminder...to vote!
PRESS RELEASE
FOR IMMEDIATE RELEASE
Jan 22-Jan 31
Save a child’s life with a simple vote.
The Boyce family, Beach Park, IL, received news no parent wants to hear Oct 09. Both children, Jayden, 4, and Brooklyn, 1, will die from a rare genetic disorder in their teen years, called Sanfilippo. Sanfilippo (MPSIIIA) currently has no treatment or cure. Their little bodies can’t break down hephran sulphate, a sugar the body naturally makes and stores primarily in the central nervous system and brain. Over time, their bodies loose all function and developmentally they never progress past the age of two. Because of the rare nature of the disease, effecting 1 in 70,000 children, it is not profitable for pharmaceutical companies to invest in research. It becomes the sole responsibility of loved ones to raise money for research. However, the Boyce’s are part of a parent organization, Team Sanfilippo Foundation, who is currently in the running for a $250,000 grant through the Pepsi Refresh Project to fund gene therapy research.
There are three ways to vote and you can help the family by simply casting votes and telling friends to do the same.
Text 105582 to the number 73774.
Go to www.refresheverything.com/curesanfilippo . Create a profile and vote with all e-mail and facebook accounts you have.
You can also search refresh everything on facebook.
Voting ends January 31, at midnight. To learn more about the Boyce family, visit http://www.buildwiththeboyces.com/
$250,000 for Sanfilippo!
Overview
Sanfilippo syndrome is a genetic error of metabolism that affects children. It is a mucopolysaccharidoses, an MPS disorder, MPS-lll. Mucopolysaccharides are long chains of sugar molecules, used in building connective tissues. When the body is finished using these molecules, it breaks them down, with enzymes, and disposes of them. Children with MPS are missing or are deficient in the enzyme to break down the molecules. Instead, the body stores these molecules and this causes progressive damage.
Thus, we plan to construct a vector plasmid for a self-complementary rAAV vector that creates the enzyme to break down the molecules. Once the vector is constructed, we will infect human MPS III skin fibroblasts cell cultures to determine the levels of expression and secretion of recombinant enzyme. After successfully replicating the vector, we will provide the GMP vector for preclinical studies and make this treatment available for all children impacted by this devastating disorder.
Thus, we plan to construct a vector plasmid for a self-complementary rAAV vector that creates the enzyme to break down the molecules. Once the vector is constructed, we will infect human MPS III skin fibroblasts cell cultures to determine the levels of expression and secretion of recombinant enzyme. After successfully replicating the vector, we will provide the GMP vector for preclinical studies and make this treatment available for all children impacted by this devastating disorder.
How will the 250K be Used? | |
| Budget Notes: The award money will NOT be used for any animal testing. | |
| $ 75,000 | Production, optimization & validating of vector |
| $ 75,000 | Perform studies on patient fibroblast cells |
| $ 100,000 | Production of clinical grade vector |
Saturday, January 15, 2011
Saturday morning happenings!
JJ is all done in!
Beeba enjoying a conversation with ? not sure who......hopefully she didn't call Norway! 
Ummmm, Ama I'm texting! Don't bother me!
The pacifier club!
Want to join our club?
Ummm it's cold out here!
Please can we come in?
What do you think Lucy should we let them in?
OK guys you can come in!
We've got toys! umm and your remote, Bubba!
Oh no! It's Bubba! 
No Bubba you can't come in!
What do you think Luce? Should we let them in? 
Ya! But hide the remote!
We love you, guys! Tuesday, January 11, 2011
A new treasure ~ peace
In a study I'm doing on Tuesday morning ~ we are studying the fruits of the spirit. Today we looked at peace. Our study had us read in John 6. The passage where Jesus feeds the five thousand. I was struck by verse 10 where Jesus instructed the people to sit down and that there was enough grass for 5000 to sit on. Then He passed out the food to those who were sitting down. They were then fed from five loaves and two fish to over flowing. I was struck by the words to sit down, that He only fed those who were sitting down. I wondered if God desires us to sit down and maybe be still so that he can feed us. How often do we eat on the run. I know I sometimes do. We want to be fed by Christ but we are often too busy to sit down. My heart was touched by the words He spoke to his disciples to have the people sit down. Then He fed them to overflowing. Does He offer that to us today? I believe He does. He has enough peace to give with overflowing baskets left over so we can give to others. What a gift.....a new treasure! Peace!
Romans 15:13
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
John 6
Jesus Feeds the Five Thousand
1 Some time after this, Jesus crossed to the far shore of the Sea of Galilee (that is, the Sea of Tiberias), 2 and a great crowd of people followed him because they saw the signs he had performed by healing the sick. 3 Then Jesus went up on a mountainside and sat down with his disciples. 4 The Jewish Passover Festival was near.
5 When Jesus looked up and saw a great crowd coming toward him, he said to Philip, “Where shall we buy bread for these people to eat?” 6 He asked this only to test him, for he already had in mind what he was going to do.
7 Philip answered him, “It would take more than half a year’s wages[a] to buy enough bread for each one to have a bite!”
8 Another of his disciples, Andrew, Simon Peter’s brother, spoke up, 9 “Here is a boy with five small barley loaves and two small fish, but how far will they go among so many?”
10 Jesus said, “Have the people sit down.” There was plenty of grass in that place, and they sat down (about five thousand men were there). 11 Jesus then took the loaves, gave thanks, and distributed to those who were seated as much as they wanted. He did the same with the fish.
12 When they had all had enough to eat, he said to his disciples, “Gather the pieces that are left over. Let nothing be wasted.” 13 So they gathered them and filled twelve baskets with the pieces of the five barley loaves left over by those who had eaten.
Romans 15:13
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
John 6
Jesus Feeds the Five Thousand
1 Some time after this, Jesus crossed to the far shore of the Sea of Galilee (that is, the Sea of Tiberias), 2 and a great crowd of people followed him because they saw the signs he had performed by healing the sick. 3 Then Jesus went up on a mountainside and sat down with his disciples. 4 The Jewish Passover Festival was near.
5 When Jesus looked up and saw a great crowd coming toward him, he said to Philip, “Where shall we buy bread for these people to eat?” 6 He asked this only to test him, for he already had in mind what he was going to do.
7 Philip answered him, “It would take more than half a year’s wages[a] to buy enough bread for each one to have a bite!”
8 Another of his disciples, Andrew, Simon Peter’s brother, spoke up, 9 “Here is a boy with five small barley loaves and two small fish, but how far will they go among so many?”
10 Jesus said, “Have the people sit down.” There was plenty of grass in that place, and they sat down (about five thousand men were there). 11 Jesus then took the loaves, gave thanks, and distributed to those who were seated as much as they wanted. He did the same with the fish.
12 When they had all had enough to eat, he said to his disciples, “Gather the pieces that are left over. Let nothing be wasted.” 13 So they gathered them and filled twelve baskets with the pieces of the five barley loaves left over by those who had eaten.
Sunday, January 9, 2011
Thank you for voting!
A big thank you for taking a few minutes to vote for this gene therapy that Pepsi is offering to help fund. If we win this money we can be so excited about the possibilities. I've been in awe seeing and hearing that people are so behind our family. So continue to vote and please pass it on to anyone and everyone. You can vote up to 3 times a day using your texting, email and facebook through January 31st. This is the first hopeful news that we have had. So thank you for getting behind this as well. God's blessings to all of you!
Wednesday, January 5, 2011
Please help !
PEPSI REFRESH
Stefanie Boyce
email: stefanieboyce@yahoo.com
family website: www.buildwiththeboyces.com
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