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Please find early September 2004 entries listed below. (September 1- 16). For late September entries, click the September 2004 link above.

Thursday, September 16, 2004 9:01 PM CDT
Channel 12 is doing a story on Lauren tomorrow (Friday) at 11am with a live remote from the Redfish in Chandler immediately following the story to try to get the word out about Saturday. It was also in the East Valley Tribune this morning. Channel 3 is trying to get a camera man to go along for the money pick up and air it at 10pm that night. Clear Channel Radio stations are going to do public service announcements….
Volunteers are needed to man the drop off location stores. People who can just come and give four hours of their day to accept donations folks are dropping off. We have most of the valley covered but we really need people out on the west side. Metro Center, Desert Ridge, Goodyear etc. If you would like to volunteer, e-mail lynettehull@kw.com and she will get you signed up!
After a couple of days of fearing this wasn't going to work out, the family's spirits have been bouyed again by a new surge of help rallying around us. Whenever we are tempted to worry and fret, the community comes through. Thank you, thank you, thank you!

The need becomes even more urgent to get her into the program as quickly as possible. If we could take her to Duke tomorrow, we would. But the lack of funding is holding us up.

The insurance company has not responded to our plea to cover this treatment. We are still hopeful they will come through, but every day is critical now.

Please help us get the word out. If you can make a donation of any amount, it will be added to the funds already in Lauren's account. If you know of anyone who might be able to make a large donation, please put them in contact with us.

As always, thank you for your love and prayers. We need them more than ever now!

We can't begin to thank everyone who worked so hard to pull this off. Lynette Hull, you are incredible and have our deepest gratitude for all you have done for us. Volunteers were at the school at 7:30 a.m. to help set up and didn't leave until 2:00, and it was 106 today!

Lauren was there the whole time and did extremely well. Fortunately, Higley High School allowed us to have access to an air conditioned building and bathrooms, and we were able to keep the kids cool and happy.

We are exhausted, but fulfilled, this evening. I think the kids will have long naps and we will hang out with family and pizza at home tonight.

Thank you again from the bottom of our hearts.

http://www.azcentral.com/community/gilbert/articles/0909gr-fundraiser09Z12.html

Channel 3 was out this afternoon to do an interview that should air tonight on their 10:00 news.

The East Valley Tribune also did an interview and that story will be in tomorrow's paper.

Lynette, the car wash/raffle coordinator is receiving hundreds of email messages a day. She cannot even read them all much less reply to each one. We hope people who want raffle tickets will just show up at Higley High School on Saturday or send a representative. We had no idea this story would become so popular and were not prepared for the wonderful, overwhelming response.

We expect a call from Lauren's genetic specialist tomorrow to go over her latest tests. These should give us a better idea of the severity of her disorder and whether or not she is a candidate for the stem cell transplant at Duke.

Thank you for your continued prayers and support.

We have spent the three day weekend doing family activities, mostly at home. Brian and Carrie took Lauren and Nathan to Chuck E Cheese Pizza and then to ride the merry-go-round on Saturday. We had family pictures taken today (see the photo page), and visited Great Grandma.

We expect a busy week this week as several news organizations have expressed interest in covering the Reed family story. There will be a consultation with Lauren's genetic specialist reviewing test results telling us if Lauren is a candidate for the cord blood stem cell transplant. We read on one website today that Duke won't even begin testing her at their hospital without a cashier's check in hand for $600,000, but Duke has not indicated that to us. They are pursuing funding along with us.

Our hearts are full as we read your guestbook entries, email messages and cards. The outpouring of love and support to our family and this little girl is soothing balm to our burdened hearts. We ask for your continued prayers and we thank you so much for all you are doing.

Thank you! We love you.

About a year ago Lauren’s parents were given the devastating news that Lauren may have a syndrome that would cause her to lose her sight and her hearing. At the time, it seemed that this was the worst news a parent could receive. Her parents, Carrie and Brian Reed, jumped right in to get answers and look for doctors and tests to confirm this diagnosis. Unfortunately the news they would receive would only get worse as results from more tests came in, indicating that Lauren has Sanfilippo Syndrome. This is a genetic disorder that affects only about 1 in 70,000 children.

Sanfilippo Syndrome does not always show symptoms right away. Typically, children born with it seem to be healthy from birth until about two years old when parents start to notice that their children may be falling behind in some of their developmental skills. Usually this alone does not cause enough concern to get the testing needed for an early diagnosis. This syndrome will slowly take away everything that Lauren has ever learned. She will lose her ability to talk, walk, eat and play. She will be in a vegetative state and eventually will lose her life. All of the doctors here in Arizona have said there is no treatment.

Carrie and Brian couldn’t give up. They eventually found one hospital in the entire nation, Duke University Medical Center, that has come up with an experimental treatment that seems to stop the disease at whatever the progression is at that time, meaning, if Lauren has lost her ability to speak, she will not regain that skill, but if she is able to hear, see, walk… those skills will not be lost. Lauren is thriving right now and our hope is to stop this syndrome before she loses ANY of her functions. The hospital is in North Carolina and the procedure will cost $600,000.00, none of which is covered by her insurance. Lauren is lucky to have a brother who may be a candidate to donate the stem cells Lauren needs. Lauren will have to undergo several more tests as well as surgery and chemotherapy, and then must be isolated for up to a year and a half. This is a major operation that has only been done thirteen times.

In just the past 24 hours, we have been able to set up an account for donations at Bank of America, under the name of the Lauren Sutton Reed Benefit Account # 004682248370, routing # 122101706 or wire # 026009593.

Also, in less than ONE DAY, The San Tan Community as well as merchants from all over the valley have come together to help raise as much money as we can.. We are sponsoring a car wash as well as a bake sale and raffle, with prizes being donated from Redfish, TGI Fridays, Bamboo Club, Diamondbacks tickets with parking passes, Lifetime Fitness, Carnation Home Cleaners, Precision Dance, Mary Kay Cosmetics and the list goes on and on..

Channel 3 news, John Warren, has been in contact with our event coordinator and has stated that they will cover Lauren’s story and has talked of broadcasting from the carwash on September 11th from 9am to 1pm. Channel 15 news is now also showing interest in this cause. We also will be sending out over 4,000 flyers to the local schools and churches. We just can't tell you the amount of love and support we are getting from this community, it is unbelievable.

The event will be held at the Higley High School on Pecos and Recker in Gilbert, AZ. More than anything we want to get the word out about Lauren and ask for the support of anyone that sees this information. We would love to see you at the car wash that Saturday. Or if you would like to purchase raffle tickets, they are being sold for $1.00 each. Just contact lynettehull@kw.com and she will be happy to get you as many as you would like. We can’t think of a better cause than to help not only save the life of a child, but to stop this disease in its tracks and give these children a chance to really enjoy life. We need as much support as we can to beat this disease.

(adapted from publicity letter by Lynette Hull)