Fundraising and Our Links
Our Helpful Sites and Many Many Thanks! Links to Lots!
Abundant Life Baptist Church located at 414 SW Persals, Lee's Summit, MO. 64081. They have been our backbone of support. The people and Staff mean so much to our family. They have opened their hearts and shown us such deep love. The church is taking donation's and checks should be made out to Abundant Life Baptist Church. " In the memo of the check or on the envelope of cash write "Benevolence" - do NOT write "Cox" anywhere on your check or envelope. Also we would like to invite anyone who is looking for a church home to visit. Thank You, Chris and Vickie Cox. Link is below. Others to contact are John Heller 816-524-2774.
Lake Winnebego Saddle Club July 4th 2008 Fundraiser
The lake Winnebago Saddle Club is holding a fundraiser for our family on July 4th. They will have ativities during the day as well as that evening. We are so thankful to all those involved. We belonged to this club when living at Lake Winnebago. The barn was right behind our house and Grace had been given a horse named Buster. We still have him but miss the Club and barn with all the members and the very best barn keepers in the world. We cannot tell you how much we desire and hope to return one day to the greatest neighborhood Lake community ever. If there are any questions regarding activities for this Friday, please contact Mary Ann or Scotty Cox at 816-537-4269.
Thank you Uncle Scotty and Aunt MaryAnn, the best aunt and uncle we could ever ask for. They always have our needs on thier hearts and have gone beyond the call of duty by always being at events and continuing to help us and never forgetting our kids. We also want to thank Josh and Randy as well his his wife Cindy and the two cutest girls, Chloe and Abby. Randy seldom misses an event and we are each time, so touched.
A BIG THANKYOU to the success of the 4th of July events. A big thanks to all the kids who participated in all the fun events. Water melon eating contests, cake walks and ice cream social were just a few of the activities. We wish we could have been there for all of it. We were thier in our hearts. To all those who worked so hard to set up and breakdown as well as particapate in any way. Lake Winnebago has been amazing to our family and we miss so many people there.
Thanks to our parents as well. Linda and Jerry Cox as they are always there for us, helping in anyway.
BEKA Williams Fundraiser 2008
We want to say a special thank you to a friend of our family. Beka and Grace meet at CampSunshine last year and we met her parents, Phil and Meg and her brothers, Kyle and Ben and sister Hannah. They also have a new addition to thier family, Nash. They are a very special family that God has bleesed us with. Each year they give up a week of thier time and volunteer at Camp Sunshine and have said what a blessing it has been for them to do so. Without these families, these camps for sick children and thier families would not be what thay are. They really make the difference. We got to know them and from that they have prayed and helped our family. We know Christ put them in our lives and He is using them in so many ways. Beka is eleven and God layed it on her heart to do a fundraiser for our family. We to this day, are so touched when a child makes such a decision. It really makes us thankful and feels our hearts with pure joy. Beka, thank you from the bottom of our hearts!
Summer Fundraiser 2008 Auction
There is a fundraiser being done June 20st in York PA. We would like to say Thank You to Jill and James Beck and family for honoring our family with this fundraiser. We are still amazed at how God continues to bless our family. We do not just mean finically but in so many ways. Each time one of these is done we feel His love and the love of others. There are no words to describe how we feel. All we can do is say thanks and continue to honor Him in all we do. We know there is a lot of work involved in any fundraiser and we thank all who were involved. Thanks also to Teresa and Mark Andrews who share our story as well as thier children who will be there this weekend. We wish we could have been there but our hearts and prayers will be.
To ALL the Kids
We have been so honored to have had many kids take it upon themselves to help our children. We want to thank all the kids at Blue Ridge Christain South who attended school with our kids and prayed continually and loved them so much. We thank Felix and his family, Jerimiah and his family, Austin and his family. We thank Audrey and family, Anna and family. We need to thank Victoria Shmitt who gave her allowence and held several lemonade sales. We thank Abby, my niece and her friend Erin. We thank Eve, another niece for giving up her birthday gifts and instead raised money for her cousins. I pray I have not left out any but we really want to thank each and every child who has ever from thier lips said a prayer for our children. We know many from church, school, the nieghborhood's, and hospitals as well as camps who have prayed for our kids. To all of you, everywhere, we say thank you!
We want to say a special thanks to the doctors who are dedicating themselves to the pursuit of helping so many families who have had SDS, SDS-like, and orphan diseases. Our family must thank all the nurses who have taken care of my childrn with such love and tenderness at Cincinnati Children's Hospital. We will miss many of the nurses who have seen my kids monthy for IVIG and thanks to all of you. We won't, however miss the trips there and have a special thanks to Dr. H who has done so much for us, working on insurance, insurance and insurance! It isn't just us who are thankful to you but all the new families who decended upon you and made you our specialised for SDS and belive you will train others not just to look for "book only " but to listen to the parents and kids. Linking our similarities together. We know there are others as well and we are also grateful to them.
Donita, Thank you for stinking it out with me and going to bat for my kids even though I wasn't pleasant! I really owe a lot to you and learned an important leason. Truley, thanks!
Thanks for all this years fundraisers, Freezen For a Reason and every single person who had a hand in doing all that was done for us. You have no idea what it means to us! There just aren't words to express all the graditude we owe to people we know and complete strangers!
LSPD
We say thanks for the Lee's Summit Police Departments Golf Tournement. Thanks to Woodman's of America and Steve Million, we cannot say enough. To Don Frizzle, who I got to know by all the phone calls, thank you. To Mike Murry and his sweet family whom we know care so deeply for our family. We thank all the donations and all the golfers, sponcers and the volunteers, including my Aunt MaryAnn and Uncle Scotty and all the other volunteers. My kids say thanks for the golf cart rides! We always worry by naming some we will hurt one left out, please know that never would we mean for that to happen. The Lee's Summit Police department ROCKS!!!
Fundraiser in Clinton Missouri
We want to thank Trinity Luthern Church in Clinton Missouri for the fundraiser. We thank the Clinton Wal-Mart as well for allowing this to take place. This is the church the kids grandparents, Jerry and Linda Cox, attend and we know how hard so many of you have been praying for all of us. We thank all who have been a part of caring for our family.
Vacation Bible School at Abundant Life
WOW! What kids can do with thier lively spririts! We always get extra exited when kids are involved in helping us. Of all the things that have ever been done for us, it is the kids that we are most touched! We have been so blessed through cards and letters written by so many promising prayer! This is always my children's greatest gifts ! So when Susan said the vacation bible school had raised all that MONEY, we were on top of the world!
With that said every single lemonade stand, allowence in the mail from so many children! the letters of sweet prayers and stories that come to our home from children. From the children at Camp Sunshine and the freinds we meet and have always known at with this disease. The comfort they give one another. The saddness they share with the lose of a friend known. It has been them that we have been most touched and blown away! No one can know just how much it means for my child to read a note of encouragement. So much focus is often put on Chris and I and how strong we are and how well we cope, oh if only you knew, our strength is nothing without Christ and our stregth we draw from them. Children just except things so well and just cope. Still, even a child needs that extra word of care, a phone call, a letter just to them, makes their month! So thanks to all the kids who care.
Eve, You too are one of those kids I am referring too. You are so special to us and we love all of your brothers too. To give up birthday gifts! That's really something and we just say we love you so much! Thank Eve Lampugnale! We can't wait to see you guys again.
We cannot possibly thank a church like Abundant Life Baptist with just a short few lines across this web page. This church has and will always be family! They have stood by us in every way possible. The people in this congregation are like none I have ever known. I cannot merly name one and to try to name them all, there isn't enough space. Nor can we name the many deeds people within the church and the church itself have done for us. We started there at a time when we could have completly fell apart. We had just had Samuel and learned he had the syntom neutropenia just as his sister Grace had. Deep down we both knew Jake too had this disease at which we had no idea what exact name, we knew well enough it was a serouis life threatning disease. We were devastated and God knew better tahn we, what we needed and where we could get it. We were brought by God to this church and our marriage and our lives were saved. God touched our souls and while we ache over our children, we have the reaaasurance of eternity and the joy no illness can take! We have been encouraged and prayed for endlessly by so many in this church and while we cannot thank each person, we know how hard many of you sacrifice for us. We beleive by your prayers and fasting, our daughter Grace has not needed the transplant and God has spared her if only for the momnet or for ever, we don't know but we praise and give all the glory to Him. By way of ones stronger than we could be daily, prayers have flooded the gates of heaven and He has heard and still listens. We are blessed to see Him work everyday in our lives. The incrediable blessings that pour into our family could only be from God but by so many faithful believers whom haven't forgotten us and continue to lift us toward heaven. Thank You and God be with you! Cox Family
Lake Winnegao is another family who has gone beyond the call of duty in helping our family. We moved to this great community in 1998 and fell in love with it. My sister, Machelle Riffe and my brother Terry Hurley both were in this community and later our Aunt and Uncle Scotty Cox also moved there. My father lived with us in our home at 423 Winebago Dr. and this was and will always be our home. We are glad to know the wonderful people living there now and believe they will be as honored to live there and be a part of this community as we are and will always feel a part of. We would one day love to return to this community that has never forgotten us just because we no longer live there but still feel so very much a part of. The friends made there are forever family and this is just one reason lake Winnebago is such a special place to live, like no other anywhere! This community has adaopted our children as thier's, our family as thiers and wrapped thier arms around us. Without this community backing up our family with friendship, love and support as well as finicial aid to us, we would not be making it with all our current bills. We have been so incrediably blessed by so many compassionate people. Our home is Lake Winnebago Missouri and our community is there. One day we hope to return to our home and church and try to repay all those who have so graciously helped us. Our biggest dream is to return with three children who are forever healed and who beat the odds, so they can become an active part of the church and community who saw them through the hardest times of thier lives and return that love and commitment to everyone who ever helped them in anyway! Thank You for none of you could grasp what we feel in our hearts for all that has and continues in our children's honor. God Bless each one and this community shall be blessed for all it's compassion.
Thanks to so many churches around the United States for prayer! We are amazed at how many people have wrote or called from all over and have heard of our family. We know God has a hand in all of this. Thank you MT. Corney Church in Mt. Grove area as well as Evening Shade in Mt. Grove for continued support and prayers. Thanks to all the churches everywhere who we don't even know names of for your prayers.
Thanks to Blue Ridge Christian School South and Main who continue to provide friendships and include my kids by gifts and phone calls to cheer my kids up as well as prayers. So many of our friends we met through school and thank all of them. Sue and Dave Wulford,Susan and Sid Cumberland, Christina and Tim Smith, The Andrews family, all the staff and many many more.
We have extended family everywhere who are praying and their churches and friends, co-workers are praying.
Thanks to our parent, Jerry and Linda Cox and Ervan Hurley who are always there no matter what, we love them and could not make it without them.
Thanks to Joann and Hank Riffe for all thier caring support.
Thanks to all our siblings, Terry and Beverly Hurley, Shari and Lenny Lampugnale, and Jim and Machelle Riffe and their prayers and support.
Thanks to all our friends close and far who are always supporting us and caring for us.
Camp Sunshine and Victory Junction
We thank strangers we met but are so touches by their williness to do anything they can for us and end up no longer being strangers. To Phil from camp and family, thank you so much. To all the camp workers and other families that touched our lives, thank you so much! Their are so many teenagers who volunteer at these camps and make such an incrediable difference in our kids lives as well as ours. The impression these kids make on mine is wonderful. My kids can't wait to be a volunteer and watching other families who have sick kids just like us and yet give back by volunteering made a great impression on Chris and I as well. We too want to return and be blessed by this as well. Thank you to all who give up thier vacations to spend a week making unforgetable memories and touching families in a way they will never fully understand. As well as all the donors who make it finacially possible for families to travel and provide this free camp to those who would have no means of such a trip. Thank You! Camp Sunshine as well as Victory Junction{Hole in the Wall} camps are places for chronically or critically ill children and families can for once totally let down and be a part of others who truley understand and feel the same and not differnt. A place where families met other families and bond closely due to like situations. Kids can say what they have without fear of being different and volunteers whose compassion and understaning often out way their age and maturity levels that these young people have is impressive. As well as the doctors, nurses, kitchen cooks, utility and construction workers who also volunteer what often is there only vacation time to make a difference in our lives. Before moving to North Carolina we had never heard of these camps and never attended. We wondered if spending a week with other sick kids and families would be a happy time. We were pleasently surpised and blown away as to what would take place in our hearts. We totally understand why volunteers give up their vacations and return year after year to work at these wonderful places. Talk about a mission ground ! God and his witnesses were there and hard at work ! There was not one person we met that did not touch our lives. Not one! To every single person there thank you for making one of our best memories ever. Chris and family .
Mike Ethington is a close friend who is learning Spanish in Costa Rica so he can become a missionary in El Salvador with Jeff and Paula Rhoades as well as Emily. His web site is www.jesussavesmike.com They all need faithful prayer warriors as well. They were home grown from our church in Mo. Abundant Life and will be planting churches as well as setting up food assistance.
LINKS TO OTHER SITES
Chris and our family want to express how we feel about all that has happened for our kids. We are constantly amazed at how God has and is taking such good care of us under this trying time. We never could have known how much love and support would be offered by so many, even people whom we don't know. We can't deny Jesus is the only reason that this is happening. We are gone and when we left, we thought our story would leave and be forgotten. We where scared of facing all of this alone, away from those we know and love. He had other plans and why we worry I don't know. Faith from others have helped us in ways only Christ could have provided. We have felt his love through his people . We truly hope all who have prayed and given know what you have done for us. You have given us HOPE! Thank You all and we Thank Jesus!
I WANTED TO SAY A SPECIAL THANKS TO ALL THE KIDS WHO HAVE IN ANY WAY HELPED ME TRY TO GET BETTER HELP FOR ME AND MY BROTHERS. LOTS OF KIDS HAVE GIVEN ALL THIER MONEY AND HELPED DO STUFF FOR US. THANKS FOR ANY KID WHO PRAY AT NIGHT OR WHENEVER FOR US. WE DON'T KNOW ALL OF WHAT KIDS HAVE DONE BUT WE WILL SAY A PRAYER TO GOD AND TELL HIM THANK YOU. LOVE, GRACE
THANK YOU TO THE LIONS CLUB AND BETA SIGMA PHI SORORITY FOR THE WINNEBAGO DINNER. We also want to say thank you to all who helped in any way. Thanks for all who came in support of our family. We always knew we lived in a special community and we are so glad. We are also thankful to all those who came outside of our community to help our family. The dinner was a huge success! Please continue to pray for the healing of our kids! Love, The Cox Family.
Shwachman-Diamond of America was founded to help patients and families raise awarness of the disease and to help raise money to educate doctors, nurses, and other medical professionals about SDS and support research. Link is above.
My friend has a great deal of information on her site. She has a page on what the kids go through and on other families with this disease.
Shwachman- Diamond America is wonderful support group led by my friend Pattie Curran. She has two of three boys with SDS and helps so many people. The other women on this list are amazing and full of information and compassion. WEB ADDRESS: www.shwachmansyndrome@yahoogroups.com.
My friend Pattie and her three boys website. Two have SDS and she founded Shwachman-Diamond America. She has been a great friend and a huge help in finding our way though endless issues. Her children are like many kids suffering with this disease. Link is below
Many people have wondered or asked how can I donate my marrow? The link below will give more detailed information. It's the National Marrow Regisrty and has been helping families find donors for a long time. It is really easy to become a donor. Often there are donor drives in your local area or families such as us may do a drive. The other way is to contact the National Marrow Registry and ask where and when a drive is being held near you or how they can be tested. In special drives, no charge is required for donors. However, most of the time there is a small fee. The test itself is simple and fast. It consists of a swab in the mouth and that's it! No needles ir pain involved! This puts you in the registry and if ever you are matched with someone in need, you would be contacted and asked if you would want to donate. That would start a process of testing and information would be given as to what you could expect. The most important thing is to become a registered donor by doing this simple swab test. The link is below or feel free to e-mail me for further information.
The National Bone Marrow Regitry
There is also a link to the Severe Chronic Neutropenia International Registry as well as the Severe Chronic Neutropenia Registry in Washington. This group helps with all types of neutropenia's{low bacterial cell count} They are often a good place to start if neutropenia is your main symtom and may be undiagnosed. They also can often help with the cost of GCSF or Neupogen.
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