Ordinary things

About one year ago I decided that I wanted to do something to help my grandbabies, Jayden and Brooklyn.  I wanted be able to give towards a house that our family wanted to help them build.  I had an idea to make a necklace using a scrabble tile.  I remember praying and asking God to use this idea to help me raise $1000 dollars to give towards building them a new home. I only asked for $1000, but God had a different plan.   God began to work in me.  He took this little idea and he multiplied it over and over.  To this date I have raised $7000.00.  Not only did God bless this idea, he multiplied it over and over again.  I'm still raising money and it's not over yet.  I realized something the last few weeks, that God is not stopped by our ordinariness, circumstances, problems or our dilemnas.  When given to Him, He can do abundantly above all that we can ask or think.  He has done that this past year.  I'm glad that God reminded me.  He says "stop and listen to your heart, Joan.  I'm speaking to you, I'm using what you have, you don't have to have a lot when I'm in it.  I use ordinary things and people.  I'm not stopped by circumstances or by your sin, or by your disobedience.  I'm not stopped by your struggles or pain.  I'm not stopped by broken things.  I'm not stopped!"  As I have leaned in to grace this past year, He keeps reminding me to give Him what I have.  Whatever that is, even if it's just a scrabble tile!   

Jayden's smile!

Today I looked into my grandson Jayden’s eyes, they were smiling.  I loved that moment.  You see Jayden can’t talk.  Unfortunately, Sanfilippo has taken that away.  So I look for moments to peer into his soul.  I grasp the moments, and with everything I have, I try and capture that smile in my memory.  I would love to bottle it up for later.  There’s something about a little boy who is full of life and activity, yet can’t communicate with words.   But Jayden has learned to communicate with his eyes.  At least that’s how I see it.  He has a gift that he gives to people who know him.  He lights up a room when he smiles.  His beautiful smile has a shine to it.  He shines his way into our hearts every day.  I know that is directly from the Lord.   In fact, God often uses Jayden to teach me.  He allows me to see Himself through the eyes and charm of a little boy named Jayden.  Trying to understand Sanfilippo is like trying to understand the mind of God.  I know that it’s not possible.  But instead I want to thank the one who gives life.  The life that God gives is sometimes not the one that we thought we’d have.  But sometimes it’s better. 

John 10:10
The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly.

Abundant life.....it does look different, it's beyond measure!  It's beyond our understanding! 

Finding grace !

I am amazed every day, that God continues to show up in our lives.  I want nothing more than to see God at work.  I'm thankful that God has restored my eye sight to see Him more clearly.  He's allowed me to see life through the lens of Sanfilippo.  It's not the lens that I thought I'd be looking through.  But I'm thankful everyday that He allows me to see Himself so beautifully through my grandbabies lives.  I'm blessed that God would take such great measures to show me who He is and that He is grace.   He reminded me that He showed up in love through 2 little children, Jayden and Brooklyn.  God gives grace and we often miss it, because we're looking through our own clouded eye sight.  I'm surprised by God's grace.  God has used Sanfilippo to tenderize my heart, and to show me what grace looks like.  He's allowed me to see and to be drawn to the broken places.  Life isn't about getting it all right,  putting all the pieces together nicely, it's more about allowing God to take the broken parts and then He pours Himself into those broken places.  He has shown me way more of who He is through the pain than He ever could have in the easy and good things of this life.  So I'm grateful that God has given me this new language, the language of grace.   I ask  that God will continue to deepen me and grow me into His likeness.  I know He will, using Jayden and Brooklyn to remind me, to remind me of the grace of God. 

Blessings of praying!

I've been wanting to write, but I stopped believing that I had anything to say.  But God keeps reminding me of whose I am.  By God's grace, He reminds me that He is enough for me.  I often think, I don't feel Him, hear Him, see Him, sense Him, but it's in that moment that I realize I just have to BELIEVE HIM.  I have to believe that He is!  When I can believe that He is, it's then God says you're enough for me, and I am enough for you.  

It seems my life is about listening mostly, sometimes sharing, and a lot of praying.  I don't feel that I pray enough, but when I do pray, I feel filled to over flowing.  I used to think that the power was in my prayer, but I realize the power is in the one who hears my prayers.  It has nothing to do with me, it has everything to do with Him.  I'm thankful for the prayers and for the one who hears them.  It's when I pray that I'm changed, maybe the circumstances don't change.  But I'm the one who is changed.  That's the gift.  I love that gift. I had parents who prayed faithfully everyday.  I probably didn't appreciate those prayers when I was young.  Now I appreciate those prayers like never before.  I sometimes wonder if God has stored up all those prayers for my life today.  So today I'm thankful for the prayers.  The prayers of a righteous man availeth much.  So I pray, Lord avail much!  He does. He will.

The sun rays were dancing across the water like diamonds glittering!  Reminding me of treasures He gives. The treasures of a view to remember.  A view to His heart.  A beautiful gift!

Treasures of abundance!

He leads me beside still waters and He restores my soul!  

What an awesome God, He knows what we need before we even ask.  As I sit here and look at a view that is too beautiful for words, I'm reminded of this verse in Psalm 23 that He leads me besides still waters and not only does He lead me to the beautiful still waters, He restores my soul in the process.  What a gift that is! 

I was enjoying the still waters from my raft the other day and I watched the waters quietly rippling as the sun rays danced across the wide open waters, reminding me of diamonds dancing and gleaming across the lake.  It was a view to remember.   The view is God given and a gift to open.  I'm grateful this week for the view.  He sometimes gives us a view to remember.  A view to His heart.  I know and realize His ways are not my ways, His thoughts are not my thoughts.  But precious are His views when we take the moment to enjoy them. 

I've been reminded lately that just like the diamonds dancing across the water, the treasures of God's provisions, His love, His view are like opening a box of abundance.  Abundant treasures.  I'm learning the treasures often come in different ways, different boxes.  I've found treasures in the darkness.  I found treasures this week dancing across the waters.  The treasures of allowing God to deepen my heart and deepen my walk with Him.  Deepen my intimacy with a loving, living Father.   Thank you Jesus for your abundance.  Knowing Him is the abundant life. 

Colossians 2:2-3 ~ My goal is that they may be encouraged in heart and united in love, so that they may have the full riches of complete understanding, in order that they may know the mystery of God, namely, Christ, in whom are hidden all the treasures of wisdom and knowledge.

Ephesians 3:20 ~ Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us.

In the grip of grace!

I was enjoying a quiet sit on a raft kind of day yesterday.  I was laying in a raft on Table Rock Lake, soaking up some sun rays along with some quiet moments.  As I was floating around I decided to tie myself to the dock, so that I wouldn't just float away and end up on the other side of the lake somewhere.   I gripped on to a rope that was hanging nearby.  As I gripped this rope, I found myself thinking about how I grip onto Christ, that this rope was somehow my lifeline to Him.  When the waves would come and rock my raft I hung on tighter.  I found this as a metophor for life as well.  But as I was gripping, I heard God break through into my thoughts and He said you don't have to worry, I'm gripping onto you much tighter than you are gripping onto me. He reminded me that it's not my grip that counts, but His grip that holds me.  I'm in the grip of His grace, His love, His hold on me.  What a great place to be, when your life raft seems to be floating away somewhere into obscurity.  You wonder during the hard moments, if you matter at all to God.  You wonder if all that you've done and or prayed for, if God even heard those cries.  He does and He continues to hear.  Thankfully it's often in the wilderness places that He shows Himself faithful.   Maybe it's the wilderness that He uses to remind us that He's got a tighter grip on us than we could ever have on Him.

Our Sweet Bee

Check out my new blogspot.  Our Sweet Bee.  I began a new little business.  I'm raising money for my 2 grandchildren Jayden and Brooklyn.  I began making scrabble tile jewelry.  It's been so much fun.  I've been very successful in selling them.  Thanks to my daughter Rian and her school and teacher friends.  Also thanks to my sister in law Jill and her school and teacher friends.  It's been wonderful and God keeps showing up and reminding me of His faithfulness.  All the proceeds go to raising money for Jayden and Brooklyn in helping build them a home that is handicapped accessible.  You can check out the link http://buildwiththeboyces.com  which explains more of their story. 

The prices are inexpensive, each charm or scrabble tile is $5.  I also have ball chains or black leather cords for $5 each as well.   Check it out then, email me at joankboyce@yahoo.com.  If you want something custom made, just email me your pic or logo or idea.  Or pick one that I've done. Thanks for taking a look. 

God continues to show up and show His faithfulness!

Reminder of God's mercy!

I haven't written anything for about a month.  I want to take the time to think and try to put my thoughts in a clear and thoughtful way.  That doesn't always happen, so I tend to not write a thing.  I have found lately though, the things I have previously written have been reminding me what God had taught me in my journey of brokenness.  I continue to ask, what is God teaching me in this place.  Why does God continue to break our hearts?   I was reminded of the story in John 11: 32-35 when Mary and Martha's brother Lazarus died,  Mary went to meet Jesus on the road.  When she came to where He was, she fell to His feet weeping.  Jesus was so moved in His spirit by Mary's brokenness that He also wept.  He wept with Mary.  His tears mingled with hers.  I think that when we cry and shed  broken tears for whatever reason, He cries tears with us.  When it seems that He's quiet, He's wiping our tears and listening to our heart, it's in those moments when He seems so far away that He's extremely close.  Psalm 34:18 reminds us that the Lord is close to the broken hearted.  I believe that the silence or what we think is silence is really the beginning of His dwelling place.  He's feeling our pain and He meets us at the point of our need.  His grace shows up in the tears and the silence!  He begins the healing process, sometimes it is to open up the wounds again to remind us of who He is.  The song that comes to my mind everytime I think about wounds, is a song from Point of Grace.  The lyrics are "heal the wound but leave the scar to remind me of how merciful you are."  So that's my thoughts for today.....to ask God to heal the wounds but leave the scar.  Every day I need to be reminded of His mercy.

Treasure of Brokenness

I've been thinking about brokenness and how God calls it sacrifice.  He calls it good.  I've found that God has so much for us to learn when we're willing to be broken for Him.  I was reading Max Lucado's devotion this morning, and it was a wonderful reminder of what is really important.  It helped me get perspective.  I often lose perspective in the midst of the the hullabaloo, the dirty laundry, the clutter, and the awesome, craziness of life.  But when we pay attention to the one who walked on water and the one who comes with the soft sounds of sandaled fee, we get perspective.  I desire to let Him lead me especially when I'm in the fog.  My momentary sufferings are so small when I think about His brokenness!

Sufferings of His Broken Heart

by Max Lucado
Go with me for a moment to witness what was perhaps the foggiest night in history. The scene is very simple; you’ll recognize it quickly. A grove of twisted olive trees. Ground cluttered with large rocks. A low stone fence. A dark, dark night.
Now, look into the picture. Look closely through the shadowy foliage. See that person? See that solitary figure? What’s he doing? Flat on the ground. Face stained with dirt and tears. Fists pounding the hard earth. Eyes wide with a stupor of fear. Hair matted with salty sweat. Is that blood on his forehead?
That’s Jesus. Jesus in the Garden of Gethsemane.
Maybe you’ve seen the classic portrait of Christ in the garden. Kneeling beside a big rock. Snow-white robe. Hands peacefully folded in prayer. A look of serenity on his face. Halo over his head. A spotlight from heaven illuminating his golden-brown hair.
Now, I’m no artist, but I can tell you one thing. The man who painted that picture didn’t use the gospel of Mark as a pattern. Look what Mark wrote about that painful night, he used phrases like these: “Horror and dismay came over him.” “My heart is ready to break with grief.” “He went a little forward and threw himself on the ground.”
Does this look like the picture of a saintly Jesus resting in the palm of God? Hardly. Mark used black paint to describe this scene. We see an agonizing, straining, and struggling Jesus. We see a “man of sorrows.” (Isaiah 53:3 NASB) We see a man struggling with fear, wrestling with commitments, and yearning for relief.
We see Jesus in the fog of a broken heart.
The writer of Hebrews would later pen, “During the days of Jesus’ life on earth, he offered up prayers and petitions with loud cries and tears to the one who could save him from death.” (Hebrews 5:7 NIV)
My, what a portrait! Jesus is in pain. Jesus is on the stage of fear. Jesus is cloaked, not in sainthood, but in humanity.
The next time the fog finds you, you might do well to remember Jesus in the garden. The next time you think that no one understands, reread the fourteenth chapter of Mark. The next time your self-pity convinces you that no one cares, pay a visit to Gethsemane. And the next time you wonder if God really perceives the pain that prevails on this dusty planet, listen to him pleading among the twisted trees.
The next time you are called to suffer, pay attention. It may be the closest you’ll ever get to God. Watch closely. It could very well be that the hand that extends itself to lead you out of the fog is a pierced one.

Happy birthday Justin!

Today Justin is 31.  Hmmmm.  Where did those years go?  My first son.....a precious gift.  I remember when the doctor said it's a boy.....Ken yelled out!  Alright!  We've been forever blessed!  I'm amazed everyday how God continues to use Justin.  In the good times and the hard times, we marvel at Justin's life.  He is a special man, who is living in difficult circumstances but he's doing it with passion, dignity and the grace of God.  Isn't that what it's all about! 

Thank you Justin for blessing our lives for 31 years.  You contnue to model and remind me what is really important in life.  Have a great birthday!  I love you! 

Seeking treasures, seeking Him

The other night, Jayden and Brooklyn were hanging out with us. I had just fed them dinner and gave them a bath.   Brooklyn was getting sleepy, so I grabbed her soft pink blanket to cuddle with.  Jayden was watching us getting comfortable on the couch.  He decided to join us,so he crawled up and sat by us on the couch. (that just never happens)  He pulled some of the pink blanket on him so that he was covered up too.  Before I knew it,  Jayden had curled up and fallen asleep on my shoulder and Brooklyn had fallen asleep in my arms.  What a special moment for me.....a moment I won't soon forget.  They looked so beautiful, sound asleep.  It was a moment of sheer delight to see them so quiet and still.  I know those moments don't happen often, but I'm glad that I was able to enjoy those few moments of sweetness.  I believe God desires sweet moments with us.  Those moments are gifts to us.  I believe He longs for those moments with His children.  I so often miss the moment of His sweet presence in my busyness.  But as I seek Him I find He waits and offers generous amounts of His perfect presence, another treasure I have found in the darkness.  As I've been seeking the treasure of His presence He graciously gives me what I need.   Continue to seek treasures! 


Romans 11:33  Oh, the depth of the riches both of the wisdom and knowledge of God! How unsearchable are His judgments and unfathomable His ways!

Gentleness ~ a treasure that's rich in humility!

I've been amazed at what God has been showing me lately.  I've discovered a new treasure called Gentleness....As I've been studying this past year the fruits of the spirit, I'm learning what it looks like to live beyond myself.  It's been very challenging, encouraging, crazy, exciting, stressful, meaningful, inspiring, all of these and more.  I realize more and more that God doesn't expect us to get it right, to be right, but to be faithful, to have an open heart.  He does the work. The 7th fruit of the spirit is gentleness, I thought I knew what gentleness meant, a gentle touch, a softness.  Gentleness in the greek is praotes.  It means humility, submission, teachability.  I learned that gentleness bows in submission.  It's the humble part of gentleness that bows to someone.  That's where it gets challenging.  Somehow, I don't really want to bow to anyone but Jesus.  But God has a plan for us and it's often with humility we accept His work in us.  Beth Moore says "gentleness  is an outward expression of feeling, but an inward grace of the soul, calmness toward God in particular.  It is the acceptance of God's dealing with us, considering them as good."

I love words like grace, gentleness and calmness.  Who doesn't want an inward grace of the soul?  When our hearts are open and ready, He comes and fills us with His gentleness that we can be prepared to live beyond ourselves.

Psalm 18:35
You have given me the shield of your salvation,
and your right hand supported me,
and your gentleness made me great.

Becoming a comforter

I received a beautiful email from my sweet and dear friend Audrey.  She made a beautiful smilebox greeting card for me.....it was full of comfort and love.  What a unique and priceless gift.  She reminded me of some words that my mom shared with her to comfort her when she was grieving a tremendous loss.  She said, That God doesn't comfort us to make us comfortable but to make us comforters. 

2 Corinthians 1:3-4

Praise to the God of All Comfort

 ³ Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, ⁴ who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

So a great reminder to me in processing through another loss, that God has great purpose and uses loss in our lives so that we are equipped to comfort others when they are in need.  He seems to be equipping me again and again. I can choose to say thank you Jesus for showing me and teaching me to become a comforter. It seems to be a natural flow for some.  It doesn't always come naturally for others.  But God does the equipping when we have open hearts to hear Him speak.  I pray for an open heart for God to do His work in me.  To do the equipping, the teaching so I can be an encourager to someone else, like Audrey was for me and my mom was for her, back 20 some years ago. 

 

 

Gladys a loving legacy of faith and family!

It seems we've had our share of sadness lately.  I wonder what God is thinking.  When is it enough?   We've now in one year, lost 2 family members and a severe diagnosis for 2 grand babies.  I'm really tired of loss.  But I am learning through each one, that God is close to the brokenhearted and saves those who are crushed in spirit.  I learn to cling to Him in these times and cling to His word.  I'm learning that God doesn't waste our pain, our sorrow, or our loss. God uses these to make us more like Him.  Each situation that leaves us in pain brings us closer to God when we let him use it in our life in new ways.

My mother in law Gladys Boyce passed away on Saturday March 12th.  She was ready to go, I know she longed for heaven.  We will miss her, she lived a wonderful life.  She had a wonderful gift of family surrounding her.  She never wavered in her faith.  She underlined in her Bible Psalm 100 and I have been looking at that scripture this week.  It has comforted my soul and I'm so glad she left that for us.  She focused on the goodness of God, even in the light of adversity, struggle and pain.

Psalm 100

A psalm. For giving grateful praise. ¹ Shout for joy to the LORD, all the earth.
 ² Worship the LORD with gladness;
   come before him with joyful songs.
³ Know that the LORD is God.
   It is he who made us, and we are his^[a];
   we are his people, the sheep of his pasture.
 ⁴ Enter his gates with thanksgiving
   and his courts with praise;
   give thanks to him and praise his name.
⁵ For the LORD is good and his love endures forever;
   his faithfulness continues through all generations. 


She certainly has left a lasting legacy of love, faith and family.  What a wonderful gift she leaves. Although we are never ready to let someone go.  It is such a shock to have to say goodbye.  But our goodbye is only for a short time.  Thankfully heaven is getting more and more precious to me all the time.  We love you Gladys.  We will miss you! 

through the song of a little boy!

I was listening to Jayden the other day when he was playing down stairs.  I was upstairs and I heard him singing.  It was so sweet as he sang his song.  He sang about his Daddy and Bubba mostly.  But it was perfectly in tune and as I listened I was reminded of the verse in Zephaniah 3:17 ~ The Lord your God is with you, He is mighty to save.  He will take great delight in you, He will quiet you with His love.  He will rejoice over you with singing.  I wondered as I was listening to Jayden sing, that maybe God was rejoicing over us with singing, and maybe using the sweet song that Jayden was singing to do just that.  It seemed to me that verse made more sense that day as it came alive through the voice of a little boy.  It seemed to really change my heart.  I often wonder how God can so simply and beautifully speak into our heart and show us that He takes great delight in us, in me.  That He would use Jayden's sweet words to remind me.  As I sat their and heard him sing about Daddy and Bubba, I heard in my heart the words Abba Father.  What a gift that was for my broken heart.  That God must really love me to show me so simply and illustrate it so beautifully.  Abba Father really loves me, He really loves us!  He is still mighty to save.  He delights in us and he rejoices over us with singing!  It's not always the way we think.  Often when we aren't expecting it, He shows up.  Maybe in the voice of a little child!  Thank you Jayden.  Continue to sing your song!  It's beautiful to Him and to me! 

patience ~ has a perfect work

We are studying the fruits of the spirit in our Bible Study on Tuesday mornings.  We have been looking at patience the past couple weeks.  Why is it when we study one of the fruits of the spirit, that becomes the one that I will struggle with that week.  It just seems to happen that way!  When we looked at love, I struggled to love, when we looked at joy, I struggled to find joy.  When we studied peace, guess what, didn't find peace that week either.  All that to say, I sense God doing a work in me and showing me how to live beyond myself.....each week that we study the fruits of the spirit.  Thank God that He has an amazing amount of patience with me, more than I have in myself for sure.  I learned today that the practice of patience helps complete something lacking in us.  When we struggle with patience with people, it often brings out the worst in us.  But that keeps us from thinking too highly of ourselves.  It keeps our pretenses from working.  In any give relationship demanding patience, God could be working life in one person and death in the other.  Meaning, that it often brings out the worst in us to get rid of it. So let patience have a perfect work!  So if God is working patience in you and it's really hard, he's bringing death to it, He could be working good in the other person, all for His purposes and all for the completion of patience in us.   Thank you Beth Moore. 

11 Corinthians 10:7-12

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. ⁸ We are hard pressed on every side, but not crushed; perplexed, but not in despair; ⁹ persecuted, but not abandoned; struck down, but not destroyed. ¹⁰ We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. ¹¹ For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. ¹² So then, death is at work in us, but life is at work in you.

voting, loving and soaring!

Wow!  I'm amazed that we have won such an amazing amount of money.  Thanks to all of you for expressing your love to our family by voting for Jayden, Brooklyn and Livia and many other children as well.  We don't know yet how this gene therapy will work, but we know that it holds amazing possibilities.  God will be glorified in their lives we already know that!

I am so amazed at the young people that have stepped up to help with raising the awareness of Sanfilippo.  Wow you guys just rock!  You make my heart soar.  God bless all of you for rocking our world.  For giving Jayden, Brooklyn and Livia a chance to live longer and richer lives.  In Isaiah 40:31 it says:

but those who hope in the LORD
   will renew their strength.
They will soar on wings like eagles;
   they will run and not grow weary,
   they will walk and not be faint.


So we find new hope today and find our strength renewed to soar on eagles wings.

Keep soaring with us!  God will be glorified through these precious children that we love so much!  Jayden, Brooklyn and Livia you guys rock my world.  I can't tell you how much I love these babies!  They are precious in His sight!  Thank you for your beautiful smiles you light up my life every day! 

Little Bee Brooklyn

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

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.

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 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! 

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.

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!

Please help !

PEPSI REFRESH

Team Sanfilippo, a group of parents who are committed to finding a cure for this horrible disease, is in the running for a $250,000 grant from Pepsi. For the entire month of January, people can vote for their favorite projects. The top finishers win the money. We want to use the money to fund a researcher at OSU, who is working on finding a treatment using Gene Therapy. We need VOTES. You can vote 3 ways - text, email and via facebook - each day. I know it is a lot to ask, but if all of my facebook friends and blog readers vote, it gets us that much closer to a cure. Do it in honor of Jayden and Brooklyn. Ask your friends and family to participate. Share the links on facebook or your blog.

 

Here are the details for voting:

1. TEXT to contact “73774” (it stands for Pepsi) the message “105582”

 

2. ONLINE Vote at http://www.refresheverything.com/curesanfilippo with every valid email account you have (work, personal, yahoo, hotmail, gmail, etc.) After you vote, click the Facebook icon on lower right to share our voting link with everyone on your FB. Remember, the sound of the Pepsi can opening verifies you are now logged in. To cast your vote, you must click the ‘vote for this idea’ button again.

 

3. ONLINE VIA FACEBOOK You can upload a Pepsi application that lets you and your friends vote from your FB page. http://apps.facebook.com/pepsirefresh/idea/ Or, click on a http://www.refresheverything.com/curesanfilippo voting link shared to your facebook. Or, click on LOGIN WITH FACEBOOK button on the top left of Pepsi login window. 

 ***please print and distribute the attached flyer!

 

Trusting Him-
Stefanie Boyce
email: stefanieboyce@yahoo.com
family website: www.buildwiththeboyces.com