My cousin just emailed me this:
The Hope Church on Teaneck Road in Teaneck will be sponsoring a Bone Marrow Registry Testing from 7am - 5 on Sunday, for a young boy who is diagnosed with a rare disorder and not diagnosed to survive without bone marrow transplant.
Coordinating the efforts at the church is Vanessa Lee vlee0121@gmail.com.
In fact, another option is to click here, then use the promo code teamconnor to receive a testing kit by mail-- to see if you are a match-- it is painless and free.
To learn out bone marrow donation, click here.
Here is Connor's story, and a letter from his Aunt Michelle below:
This is Connor, my nephew.
Connor is my brother’s only child. He’s a beautiful 5 year old with a sweet disposition and an amazing way with any kind of gadget or computer. He’s an avid swimmer, loves all things Ben10, and considers the little mermaid Ariel his girlfriend.
We just learned that he has X-linked hyper IGM. This clinical sounding disease is a devastating immuno-deficiency. The 1 in a million diagnosed with this condition usually succumb to liver cirrhosis or lung infection during childhood, the lucky few may survive into their mid-20’s.
Connor’s dad says Connor never complains about the many needles that the nurses poke him with during his monthly blood transfusions or about the innumerable flus, stomach aches and other infections he’s had since he was born.
Before I learned about Connor’s disease, I never knew how risky and grueling a bone marrow transplant is. Chemotherapy strips away the existing immune system to make room for the new immune system that a donor provides. This is followed by 6 months post-operative isolation in a hospital room.
But it’s the only hope he has, the only known cure.
I’m asking one thing. Please get your bone marrow typed and join a bone marrow registry. Just go to www.marrow.org to register online (promo code teamconnor). They’ll mail you a free kit with cotton swabs to collect a sample. It's painless and doesn't cost anything but 10 minutes of your time.
Please help save Connor and others like him. Thank you.
Michelle – Connor’s Aunt
(update, Mon. July 12, 2010)
I asked my cousin, who volunteered at the event, to synopsize what went down there yesterday. He had told me that 73 folks were tested and joined the bone marrow registry.
Volunteers set up tables inside of the Hope Church. As members of the congregation finished Mass they were told the story of Connor and the need for individuals to be tested for possible Asian Bone Marrow matches.
Those who chose to donate were given applications (English and Korean) to complete. Following the registration process, each potential donor was given four cotton swab sticks, each marked with a unique number. In each of the four quandrants of the mouth, donors were asked to rub the cotton swab for 10 seconds and place then in the holders provided. Each will be mailed out for testing.
A video clip played to show this cute little boy and the story was written in both English and Korean.
The table was manned from 7am to 5pm by volunteers.
The Hope Church on Teaneck Road in Teaneck will be sponsoring a Bone Marrow Registry Testing from 7am - 5 on Sunday, for a young boy who is diagnosed with a rare disorder and not diagnosed to survive without bone marrow transplant.
Coordinating the efforts at the church is Vanessa Lee vlee0121@gmail.com.
In fact, another option is to click here, then use the promo code teamconnor to receive a testing kit by mail-- to see if you are a match-- it is painless and free.
To learn out bone marrow donation, click here.
Here is Connor's story, and a letter from his Aunt Michelle below:
This is Connor, my nephew.
Connor is my brother’s only child. He’s a beautiful 5 year old with a sweet disposition and an amazing way with any kind of gadget or computer. He’s an avid swimmer, loves all things Ben10, and considers the little mermaid Ariel his girlfriend.
We just learned that he has X-linked hyper IGM. This clinical sounding disease is a devastating immuno-deficiency. The 1 in a million diagnosed with this condition usually succumb to liver cirrhosis or lung infection during childhood, the lucky few may survive into their mid-20’s.
Connor’s dad says Connor never complains about the many needles that the nurses poke him with during his monthly blood transfusions or about the innumerable flus, stomach aches and other infections he’s had since he was born.
Before I learned about Connor’s disease, I never knew how risky and grueling a bone marrow transplant is. Chemotherapy strips away the existing immune system to make room for the new immune system that a donor provides. This is followed by 6 months post-operative isolation in a hospital room.
But it’s the only hope he has, the only known cure.
I’m asking one thing. Please get your bone marrow typed and join a bone marrow registry. Just go to www.marrow.org to register online (promo code teamconnor). They’ll mail you a free kit with cotton swabs to collect a sample. It's painless and doesn't cost anything but 10 minutes of your time.
Please help save Connor and others like him. Thank you.
Michelle – Connor’s Aunt
(update, Mon. July 12, 2010)
I asked my cousin, who volunteered at the event, to synopsize what went down there yesterday. He had told me that 73 folks were tested and joined the bone marrow registry.
Volunteers set up tables inside of the Hope Church. As members of the congregation finished Mass they were told the story of Connor and the need for individuals to be tested for possible Asian Bone Marrow matches.
Those who chose to donate were given applications (English and Korean) to complete. Following the registration process, each potential donor was given four cotton swab sticks, each marked with a unique number. In each of the four quandrants of the mouth, donors were asked to rub the cotton swab for 10 seconds and place then in the holders provided. Each will be mailed out for testing.
A video clip played to show this cute little boy and the story was written in both English and Korean.
The table was manned from 7am to 5pm by volunteers.
Ok I signed up. But if I'm selected you are:
ReplyDeletea) driving me
b) not telling everyone how I screamed like a little girl.
I'm like info. We'll car pool, yes?
ReplyDeleteThank you, sweethearts. That's plural.
ReplyDelete