A little more about Kai Kai

Back in the first post I told everyone a little bit about our family and Kai's disease. Since then the posts have focused on the fundraiser. I would like to take a step back and focus a little more Kai Kai and his needs. Kai is a very sensitive, kind, and loving little boy. He is so quick to forgive those who have hurt him physically or emotionally. Even still I have had a hard time giving him the care he needs to maintain a good quality of life. This care includes physical therapy, wearing of braces, doctors visits and daily stretching (by me) in order to prevent contractures. For the last year and a half I have been living in denial. My thoughts have been that if I just ignored the fact he is sick maybe it will magically go away or at least not get any worse. After seeing him suffer over the past few months with a great deal of pain, we have decided that living in denial is causing more harm than good. So we are taking the steps necessary to help Kai Kai maintain his quality of life. Right now he is still walking but tires very easily and if he over does it he has a lot of pain. Hopefully by getting him new braces and getting him back in physical therapy we can help him at least overcome some of the pain. We also need to take him to see Dr. Carsten Bonneman in Philadelphia, who specializes in collagen VI disorders.
One last thing, we have been completely overwhelmed by the amount of concern and love that has been shown to our family at this time. THANK YOU ALL SO MUCH. We hope to see everyone this Saturday!!

Auction List

On the flier that we are sending around it says that we will post a list of the items up for auction on here. If we were to actually list all of the items on the blog it would take up way to much space. So if you would like a list just send us an email and we will forward one to you. Just a little side note, we have been completely overwhelmed and humbled by all of the donations. People who don't even know Kai have jumped right in to help us pull this off. Thank you once again for all of your kindness. We are all very excited for the 2nd of August and hope to see everyone there!!

-Jessica-
wynkoopfamily@rapidwave.net

Update

Here is an update on the Fundraiser.....there are so many cool items being donated for the auction that I think I am in heaven. I only wish that I could keep them all. I hope that all of you are planning to attend the fundraiser. Again it will be held at Bonneville Park (1600 N 800 W) in Orem UT. We will be there from 9am to 2pm and look forward to seeing all of you friends and family, and hope to make many more friends. The carnival games will be a lot of fun for the kids and for the adults. We also have Subway sandwiches and snacks that will be available. I hope to post a list of the auction items that will be available by the end of the week. Please check back for more updates. Again we appreciate all of the kindness out there. Last but not least I want to welcome all of the P1's that are checking in now, thanks to the kindness of Hans we are getting a lot of interest.

--Jeremy

Batchelor

Jessica and the kids are at a family reunion...Thus I am having a hard time sleeping. The house is to quiet. The location and times for the fundraiser have been set now and are as follows:
The fundraiser will be held at the park located in orem at 1600 North and 800 West from 9am to 2pm on Saturday Aug 2. We are still firming up what activities will be happening, so any ideas are welcome. We are doing the auction for sure....any of you who would like to see a pre-list of the items that will be available please email us. Subway is donating sandwiches so there will be food and plenty of fun to be had. Thank you all again for your kindness!

Dads First Post

I thought that I should share my thoughts with all of you... The suggestion was made to me by a co-worker that we should have a fundraiser to help with the cost of Kai's care. We have decided to have a fair/carnival on Saturday Aug. 2, part of what we will be doing there is having an auction. I have a few items that have been donated for the auction, they are mostly sports related. We have a basketball that is signed by the whole Jazz roster from last season, a Larry Miller Entertainment Package. Utah Flash tickets. We also have a number of framed artwork pieces that we will be auctioning. I have been very overwhelmed by the response of those around us that are wanting to help. We hope that by doing this fundraiser we will be able to defer some of the costs in taking Kai Kai to Philly to see Dr. Bonneman. I will probably not post as much as my wife but will contribute while possible. If you have any questions for my wife or myself please don't hesitate to comment or to email us. Thank you again for all of your help!

About Us

I know that many of you who read this blog may not know our family. So to start off here is a little background. Jeremy and I (Jessica) were married October 12, 2000. Ten months and two days later along came Ainsley Mae a beautiful blue eyed baby girl. She is getting ready to turn seven and loves everything that comes along with being the big sister. June 22, 2003 Daniel Peyton came to our family for only an hour before going back to his Father in Heaven. We were so heart broken that we wasted no time bringing Kai Brian into the world. He decided to share a birthday with his Grandpa "Mike". Kai Kai is a very imaginative little boy, who absolutely loves Spiderman or any other super hero. He also loves to watch any sport that happens to be on. On New Years Day 2006 Brady Michael joined our family, and in January of this year the final addition Abigail Jane joined us. Brady is our monster and family comedian and Abby J is our other beautiful blue eyed girl that loves everyone she comes in contact with. This is our family, now a little about the purpose of our starting this blog. Two years ago Kai was diagnosed with Ullrich Congenital Muscular Dystrophy, a collagen VI disorder which is very rare. So many individuals either go misdiagnosed or not diagnosed at all. Most children with UCMD are wheelchair bound in the first decade of life. Due to the fact it is late at night I will post about the disease more in depth at a later date. One last thing before I go to bed, it is our hope that by starting this blog we can make the community more aware of this disease and may save another family the headaches and heartache we went through in receiving a diagnosis.