(no subject)
Ok people, I'm going to preface this but my friend at work, Dianna, wrote everything not in red. The Nephew of my Associate Director, Gotha Johnson, has two boys that were just diagnosed with the terminal illness detailed below and I just found out today and my heart started to ache.
Here is a link to WebMD for some more information
And here is some more info!
This is the clinical study the boys will be going through
I'm posting this in case anyone in the seattle area has anything to donate by next thursday for the garage sale has volunteered to put on to help raise the money required for the experimental medical proceedure both boys are going to have to go through. Since it is just experimental because of no known cure at this time, insurance will not cover any of the medical expenses.
For those not in Seattle but willing to help out, there is a link and pathing towards the bottom of this email where any amount may be donated. Just think... you can drink one less drink at the bar this weekend and use that $8 to help these cuuuuuute little boys survive. They are the only children of Gotha's nephew. Money donations are tax deductible and I believe there are instructions on the site for how to get the necessary receipt. Hey it's almost that time.. .TAX time! So you can get a little more back while helping save two lives!
For those wanting to donate any items for the garage sale, please message me and we can either meet up or I'm willing to come pick up whatever you have, since I see Dianna everyday I'll be able to take everything to her to sell. I'm done babbling... If you have any questions, message me... I'll let Dianna take it away in her email...
I'm writing to you to ask for your help. A family close to me is in need of assistance and I'm reaching out to all of you, my friends and family.
Please help us save the lives of Titus and Roman Taylor. Titus is an active 2 year old and Roman is his 5 month old brother. Both children were recently diagnosed in the last month with Krabbe (pronounced crab-A) disease, a terminal illness.
Krabbe disease is a genetic disease that does not allow for proper nerve development in the brain. Each nerve in the body is surrounded by a myelin sheath which carries the electrical impulses to every other nerve. In Krabbe, this sheath is not forming correctly, thereby not allowing a full and proper message to be carried to the other nerves. The most affected by this is the central nervous system. Left untreated it leads to death.
The treatment for Krabbe is a cord blood transplant. The cord blood transplant that can save Titus and Roman's lives will be performed at the University of Minnesota Medical Center in Minneapolis. The Taylor family traveled to Minnesota this week to meet with the specialists for consultation and testing for the boys. Time is critical with this disease.
The road the boys and their family face is a difficult one. The cord blood transplant procedure is difficult enough, but add to that, both boys having to have the treatment and it has to be performed in Minnesota, thousands of miles away from their home in Washington State and their support system. In addition, this procedure for both boys will cost in excess of $500,000. A small cost associated with giving these beautiful children a chance at life but still a huge financial burden for this family.
Their situation has touched my heart and I have volunteered to assist their aunt, Gotha Johnson, with a fund raising campaign. This campaign will help Titus and Roman's family with these costs. A website has been set up with the Children's Organ Transplant Association where Gotha will be posting more information about the boys and their fight for life. The website provides a way for individuals to donate to this cause. We will also be posting a calendar of future fund raising events on this site.
Please help us give them a chance at recovery from this terrible disease.
Here is how you can help!!!!
Clean out your closets and donate items for a charitable garage sale in Titus and Roman's honor:
I will be hosting a garage sale that will be held Saturday, November 20th through Sunday, November 21st.
All proceeds from the garage sale will be donated to this cause. If you have any items you would like to donate, please let me know and I will be glad to pick them up or arrange for drop off at our house. All items need to be collected by Wednesday, November 17th.
Donate items, gift certificates, services, etc. for a silent auction
We would like to host a silent auction in the very near future and would appreciate any donations of items or services that would lend to an auction environment. Possible items for consideration include: a round of golf at a local course, dinner for two at a local restaurant, homemade blankets and other items. Please let me know if you have any items for consideration.
Spread the word
Please send this email on to your friends and family. In the last few days, we've received some wonderful advice and offers of help just from minimal contact with immediate family members who then reached out to others. The power we have at our disposal is phenomenal......we could do so much!
Continue to visit Titus and Roman's campaign website (path below) to view upcoming fundraising events. Some ideas in the works are charity concerts and golf tournaments.
Donate
Donate at: www.cota.org > Patient Campaigns > T > Titus & Roman Taylor’s Campaign
Volunteer
As we gather momentum for setting up future fundraising activities, we may be in need for resources to help coordinate or man these events. In addition, if you have ideas for fund raising (through your church, social groups, etc), we welcome the help.
Let me finish by expressing my thanks for reading through this email and helping out in any way you can. I consider myself very blessed to have such wonderful friends and family in my life. Please keep Titus and Roman in your thoughts and prayers.
Dianna Bunting
Here is a link to WebMD for some more information
And here is some more info!
This is the clinical study the boys will be going through
I'm posting this in case anyone in the seattle area has anything to donate by next thursday for the garage sale has volunteered to put on to help raise the money required for the experimental medical proceedure both boys are going to have to go through. Since it is just experimental because of no known cure at this time, insurance will not cover any of the medical expenses.
For those not in Seattle but willing to help out, there is a link and pathing towards the bottom of this email where any amount may be donated. Just think... you can drink one less drink at the bar this weekend and use that $8 to help these cuuuuuute little boys survive. They are the only children of Gotha's nephew. Money donations are tax deductible and I believe there are instructions on the site for how to get the necessary receipt. Hey it's almost that time.. .TAX time! So you can get a little more back while helping save two lives!
For those wanting to donate any items for the garage sale, please message me and we can either meet up or I'm willing to come pick up whatever you have, since I see Dianna everyday I'll be able to take everything to her to sell. I'm done babbling... If you have any questions, message me... I'll let Dianna take it away in her email...
I'm writing to you to ask for your help. A family close to me is in need of assistance and I'm reaching out to all of you, my friends and family.
Please help us save the lives of Titus and Roman Taylor. Titus is an active 2 year old and Roman is his 5 month old brother. Both children were recently diagnosed in the last month with Krabbe (pronounced crab-A) disease, a terminal illness.
Krabbe disease is a genetic disease that does not allow for proper nerve development in the brain. Each nerve in the body is surrounded by a myelin sheath which carries the electrical impulses to every other nerve. In Krabbe, this sheath is not forming correctly, thereby not allowing a full and proper message to be carried to the other nerves. The most affected by this is the central nervous system. Left untreated it leads to death.
The treatment for Krabbe is a cord blood transplant. The cord blood transplant that can save Titus and Roman's lives will be performed at the University of Minnesota Medical Center in Minneapolis. The Taylor family traveled to Minnesota this week to meet with the specialists for consultation and testing for the boys. Time is critical with this disease.
The road the boys and their family face is a difficult one. The cord blood transplant procedure is difficult enough, but add to that, both boys having to have the treatment and it has to be performed in Minnesota, thousands of miles away from their home in Washington State and their support system. In addition, this procedure for both boys will cost in excess of $500,000. A small cost associated with giving these beautiful children a chance at life but still a huge financial burden for this family.
Their situation has touched my heart and I have volunteered to assist their aunt, Gotha Johnson, with a fund raising campaign. This campaign will help Titus and Roman's family with these costs. A website has been set up with the Children's Organ Transplant Association where Gotha will be posting more information about the boys and their fight for life. The website provides a way for individuals to donate to this cause. We will also be posting a calendar of future fund raising events on this site.
Please help us give them a chance at recovery from this terrible disease.
Here is how you can help!!!!
Clean out your closets and donate items for a charitable garage sale in Titus and Roman's honor:
I will be hosting a garage sale that will be held Saturday, November 20th through Sunday, November 21st.
All proceeds from the garage sale will be donated to this cause. If you have any items you would like to donate, please let me know and I will be glad to pick them up or arrange for drop off at our house. All items need to be collected by Wednesday, November 17th.
Donate items, gift certificates, services, etc. for a silent auction
We would like to host a silent auction in the very near future and would appreciate any donations of items or services that would lend to an auction environment. Possible items for consideration include: a round of golf at a local course, dinner for two at a local restaurant, homemade blankets and other items. Please let me know if you have any items for consideration.
Spread the word
Please send this email on to your friends and family. In the last few days, we've received some wonderful advice and offers of help just from minimal contact with immediate family members who then reached out to others. The power we have at our disposal is phenomenal......we could do so much!
Continue to visit Titus and Roman's campaign website (path below) to view upcoming fundraising events. Some ideas in the works are charity concerts and golf tournaments.
Donate
Donate at: www.cota.org > Patient Campaigns > T > Titus & Roman Taylor’s Campaign
Volunteer
As we gather momentum for setting up future fundraising activities, we may be in need for resources to help coordinate or man these events. In addition, if you have ideas for fund raising (through your church, social groups, etc), we welcome the help.
Let me finish by expressing my thanks for reading through this email and helping out in any way you can. I consider myself very blessed to have such wonderful friends and family in my life. Please keep Titus and Roman in your thoughts and prayers.
Dianna Bunting