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06/27/2008 - Logaberger Basket Bingo
Longaberger Basket Bingo
to benefit
CURTIS ANTHONY
Saturday, October 18, 2008
Doors open at 12:00 PM
Games begin at 1:00 PM
St Anne Ukrainian Catholic Church
1545 Easton Rd. ( Rt. 611 )
Warrington, Pa 18976
Admission $25.00 in advance
$30.00 at the door - if available
Send check and self addressed stamped envelope to:
Nancy Kapper
1828 Jericho Drive
Warrington, Pa 19876
We can hold the ticket at the door if you wish
Not included in admission package:
Chinese Auction Raffle Tickets
Extra Games 50/50 tickets
Family and friends thank you for your support and hope you enjoy your evening out.
The Longaberger Company is not a sponsor of this event.
The Longaberger name is used solely to describe our unique prizes.
06/02/2008 - Super Cuts Hair Salon sponsors Curtis
Super Cuts at Barn Plaza
1745 S Easton Road
Doylestown, Pa
215-343-4832
For every full price hair cut, Super Cuts will donate $2.00 to the Curtis Anthony Fund. Just announce the cut is for Curtis.
Thanks in advance...
04/24/2008 - More Improvements
We received a report from Curtis' physical therapist at Easter Seals that she is pleased with his neck and trunk control. It is definitely better than when we got back from China. He did well doing his exercises on the large therapy ball.
He also almost rolled all the way over! We discovered that he likes to just lay on the floor flat on his back. He turns his head and his arms and legs are constantly moving and kicking. It's good exercise for him. Well just the other night while Aunt Jenn and cousin Kylie were visiting, Curtis decided to roll over. It was just the one arm caught under his body that kept him from doing the whole manuever. We were very excited. We're hoping and praying that he continues to get stronger.
04/07/2008 - Improvements!!!
I know, I know. It’s been way too long since I’ve made an update. But I have some good news to share! Curtis has started bearing weight on his feet again and his neck and trunk control are improving. I found out by accident that he is able to bear weight on his feet again. I was picking him up from the floor and before I stood up with him I realized that it seemed a little easier than before. I relaxed my grip a bit from under his arms and saw what was happening. Curtis had a small smirk/grin on his face. He was very happy about it too! He’s also started picking up things from his lap. We have a small squishy ball that we put in his hands. He can open his fingers and grasp it now. These are all miracles in our eyes. His teacher at school also noticed that he is turning his head to follow voices. Curtis used to always look to the left. I think this is very common with all Battens children. He is now turning his head to the right. We are thrilled to be seeing these changes.
Now we’re anxiously waiting for the weather to warm up so that we can spend some time outside. We are still taking Curtis in the hot tub but it will be better when we don’t have to rush in and out.
03/25/2008 - CBS INTERVIEWS AFTER CHINA VISIT
Paste this link to your internet browser http://cbs3.com/local/Bucks.County.Batten.2.684605.html
Bucks Co. Boy Continues Disease Fighting Journey
Reporting
Lesley Van Arsdall BUCKS COUNTY (CBS 3) ―
A Bucks County family is on a journey to find a medical miracle to save their 5-year-old son.
Curtis Anthony was diagnosed with a rare neurological disease last April called, 'Batten Disease.'
"His body is missing an enzyme which prevents toxic build up in the brain and they slowly sire," said his mother, Donna Kapper.
In just months Curtis lost the ability to eat, walk, speak and see. With few options and through donations the family raised $50,000, which was enough to send Curtis to China for special treatment.
In China Curtis received injections from stem cells to slow the disease, however this practice is only in clinical trials in the United States.
"Even his doctor said it's crazy that you have to go all the way to China to get a treatment that could be developed here in the States," said Donna.
Doctors familiar with the disease say there is no other option to help cure the disease at this time.
"The treatment we have to arrest the disease is zero," said Dr. Stewart Barbara of Valley Pediatrics.
After two months of treatment Curtis is back home and able to go to school. His mother said she saw improvement after the first injection.
"He was looking around the room and we got him to say a word" said Donna.
Doctors say it will take at least five months to see and progress from the injections.
"If it's going to slow it down, if the child can benefit, its way to early to say that," said Dr. Barbara.
If the treatment is successful Curtis will have to return to China two more times, which will cost the family around $100,000.
To find out how you can make a donation go to curtisanthonyshope.org.
03/11/2008 - First update from home
Hello all. It’s so good to be home again. I apologize for not making an update to Curtis’ website sooner than this but I did have a reason for not posting sooner. I’ve been waiting so that I could post some positive news and improvements. We got this last night in the form of laugher and smiles. It’s taken Curtis all week to get back into this time zone. He’s been sleeping all day and up some of the night.
I was lucky enough to capture some of his smiles and laughs on video last night. It’s under the videos album in the photo gallery. You’ll notice that I’m making a weird noise in the video. The noise I’m making is from a puppet on one of his Baby Einstein videos. The puppet says “Blaaaaaah.” Chandra and I discovered that he thought this was very humorous. So I was attempting to get him to smile and I was ecstatic when he actually tried to imitate me. At first I thought it was Ava making the noise since I heard it when I walked away from Curtis for a second. But then he did it again. This is a huge improvement!
Here’s the story that I’ve been telling everyone that asks me about the treatment and if it was successful. I believe that it was successful. Overall, Curtis is happier and more aware of his surroundings than he was before we left for China. I think that we’ve improved his quality of life. The doctors have told us to wait 3 to 6 months to see more improvements from the stem cell treatments. We will decide then if we will go back for further treatments. Curtis lost almost all of his strength while we were in China. He was bearing weight on his feet and making step motions with our support underneath his arms. He had better neck and trunk control after the first injection than I’ve seen him have in quite a few months. Then he had either an allergic reaction or maybe a viral infection which caused him to lose all his strength. I think that we are slowly seeing this improve and we can only hope and pray that he gets his strength back. We will continue with the physical & occupational therapy routine that he received in China to help him along.
The treatment was worth it and I would do it again if needed. We wouldn’t have been able to do it without the love and support (both emotional and financial) of each and every one of you. Thank you from the bottom of our hearts for being a part of our lives.
02/25/2008 - Fourth and final injection is done!
Curtis woke up smiling this morning so we knew it would be a good day! It’s 10:30 am Tuesday morning and Curtis has received his fourth and final injection. He is sleeping soundly right now next to Aunt Chandra. Everything went well. CNN came to interview us yesterday and they came back today to record more footage. We don’t know when it will air yet but you’ll know as soon as I know.
Only 4 days left until we come home! I am so excited to see our family and friends again. It has been wonderful here and everyone is so nice but there’s no place like home. Which reminds me; we watched the Wizard of Oz yesterday and discovered a new saying to get Curtis to smile. It’s “Lions and Tigers and Bears, oh my!” In my opinion, the fact that he is laughing and smiling again is by far the most important improvement. I think I’ve mentioned before that Curtis was not doing either when we first arrived in China. There have been so many things that we’ve been doing or saying to keep him smiling. Here’s a brief list.
• “Curtis is a handsome boy.” – This is Yolanda’s saying. She’s Curtis’ favorite nurse.
• “Silly hens, silly passengers. You can keep them both.” – from Thomas the Train
• “Oh my goodness, oh my goodness.” – from Annie
• “Curtis Christopher Anthony” Grandmom discovered that he likes it if you say his whole name and sort of sing it instead of saying it.
I’ve added some more pictures to the photo gallery. I hope you enjoy them.
With Love from China!
Donna, Curtis and Chandra
02/16/2008 - Curtis News!
Curtis slept very good last night and he woke up smiling! That started the day off great. He had a physical therapy session with Lily this morning and again was smiling throughout most of the hour. We went straight from PT to TCM (Traditional Chinese Medicine). He fell fast asleep during his massage. He then proceeded to sleep through the hour during which we were supposed to be with Cindy for occupational therapy. I will do these exercises with him tonight when he’s done with the IV fluids for the day. As I’m sitting here typing, Curtis just started laughing again! There’s a line in one of his Thomas shows that he finds very funny lately. Bulgy says, “Silly hens, silly passengers, you can have them both.” I just backed up the DVD to play it again and of course he laughed again. I’ll do this again, take a picture, and add it to the photo gallery under the Pictures from Beijing album.
It’s starting to get a little warmer here in Beijing. I shouldn’t use the word warm, but today is not as cold as it was before! I put Curtis in his stroller to sit outside for a bit. I think he needed some fresh air. The sun is shining and it’s 43 degrees right now.
Hopefully it will be even warmer tomorrow and we can get Curtis outside again for some more fresh air.
02/14/2008 - 3rd injection
Curtis received his 3rd injection today. He was asleep when they took him for the procedure. He was only gone for 15 minutes and was brought back to us still fast asleep. He slept for 3 of the 6 hours that he was required to stay on his back. The other 3 hours were spent changing pull-ups to keep him dry. He is getting a lot of fluids through his IV and is a peeing machine. Again, we didn’t see the amazing reaction that we saw after the 1st injection, but we are still seeing improvements. I was just sitting in front of the computer talking to my sister when I heard Curtis laughing over in his bed. I had his DVD player set up in front of him and he was laughing at Thomas the Train! Sometimes we have to work hard to get smiles and laughs out of him. It’s music to my ears when he laughs.
I had my fix of western food last night. I went out to dinner with three other couples that are here at the hospital. Two are from the states and the other couple is from London. Diana, one of the international coordinators, went with us too. She got us all to the restaurant but at first she didn’t want to join us for dinner. Her excuse was that she didn’t like American food. I told her she had to come since I’ve been eating Chinese food for 6 weeks and I was sure that we would be able to find something that she would like. The restaurant is called Grandma’s Kitchen and I had a cheeseburger and french fries. And I have to admit that the food was better than some that I’ve had in the states! I even brought back a Philly cheesesteak for Dad which he said was very good. Not the same,…but good!
We have 2 weeks to go and lots of improvements to look forward to. I like it here and I’m so excited about the treatment that Curtis is receiving, but I am very anxious to get back home to see everyone. It’s so hard to be away from Ava (and Paul too). And I can’t wait to see my new kitchen. For those of you that don’t know, Paul and our good friend Doug have been hard at work redoing my kitchen! I hope it’s done by the time I get home. The first thing I plan to make in my new kitchen is my special chili!!
I will do my best to make another update tomorrow evening to let you know how Curtis is doing after this injection.
Love to all,
Donna, Curtis and Pop-pop Charlie
02/07/2008 - Video
Dad and I figured out how to add video to the photo gallary. We haven't figured out yet how to use the paint program to give him hair! I'll work on that tomorrow. Check out the new album to see Curtis' latest giggle session with Pop-pop.
02/06/2008 - Happy New Year!
Curtis is still doing well. It took him about a week to fully recover from the allergic reaction that I mentioned in a previous update. We then had to add a new medicine that wiped him out for another 3 days until his body became accustomed to it. Now things are looking up again! Just this morning, I had him reclined in his bed while I was walking around the room getting his a.m. meds and breakfast ready. I looked over and he was sitting up all by himself. His therapists have said that he’s looking better and seems stronger each day. He is still not drooling and he’s smiling more and more each day.
Pop-pop arrived on Sunday. Curtis was full of smiles and almost giggling. I’ve added some new pictures of Curtis & Pop-pop so that you can all share in the smiles.
Mom and Dad are out today to see the Great Wall. I will post pictures to the website when they get back with my camera. The next few days will be slow since there are no therapies. They are down to a small staff here at the hospital since it is their New Year celebration and the start of Spring Festival. We do however have access to the gym so that we can still do exercises with Curtis. Cindy, his occupational therapist, was even nice enough to give us homework! She wrote down the stretches and exercises that we should do on a daily basis. I will have to rely on Mom and Dad to do the heavy lifting though. I pinched a nerve in my back which had me in a lot of pain yesterday. I was very lucky that the TCM (Traditional Chinese Medicine) doctor was willing to do a little acupuncture and massage for me! I feel so much better. I promised everyone that I wouldn’t lift Curtis.
I can’t believe that it’s already been over 4 weeks since we arrived. We miss our family and friends so much. I’m lucky that technology like Skype exists. I am still able to see and talk to Paul and Ava every day.
Keep those thoughts and prayers headed our way!
With Love,
Donna and Curtis
01/29/2008 - 2nd Injection Complete
Hello Everyone!
The second injection went great. They came for him a little after 11am and he was brought back only 15 minutes later. I was not as worried this time as I was 2 weeks ago. Curtis was asleep when they took him to the OR and was still asleep when they brought him back. Or maybe he was asleep again. I can’t imagine that he would have slept through the procedure. He had to lie on his back without lifting his head for 6 hours after the injection. Lucky for us, Curtis continued to sleep for 3 more hours. When he woke up he was content to just lay with me in bed and watch/listen to his DVD movies. We’re going to need new movies soon since we’re wearing the ones we have pretty thin by playing them too much! I was also happy that he didn’t appear to be in any pain or discomfort this time. He had a quiet moan during the entire 6 hours following the first injection. This time he didn’t cry at all. We were hoping to get Curtis to speak again today but that didn’t happen. I’m not sure how to explain the improvements that we saw just hours following the first injection. The doctors told us that we should see the major improvements after the fourth, maybe the third, injection. I think that the best is yet to come!
Curtis will have no therapies tomorrow and will start back on Thursday. Then Pop-Pop comes on Sunday. We can’t wait to see him.
With Love,
Donna, G-Mom Nancy, and Curtis
01/26/2008 - Update from China
It's Saturday evening and it's been a long week. But things are getting back to 'normal' now. Curtis woke up last Sunday with a fever and a rash started Monday morning. I think it's all under control now but it wiped him out. He slept a lot Sunday through Wednesday. He had to skip his therapies on Monday and Tuesday. On Wednesday, his physical therapist, Mark, came to our room to give Curtis a bit of a workout. His TCM doctor also came to the room to give Curtis his daily massage. But he woke up smiling and laughing Thursday morning so I knew he was finally feeling better. I had plans to go shopping with May that day and I was so happy that Curtis was better so that I didn't have to cancel. It was nice to get out of the hospital and see a bit of the city. May took me out to lunch and then we went to Silk Street to do some shopping. We also stopped at Tiananmen Square to do a little sight seeing.
Curtis' next injection is scheduled for this Tuesday, January 29th. This time I will have the video camera on when I try to get him to talk after the injection. I'll make more updates on Tuesday to let everyone know how Curtis is doing.
With Love from China,
Donna, Grandmom Nancy and Curtis
01/19/2008 - 4 days after 1st injection
Curtis is still doing very well. He hasn't spoken again but we've seen other changes. He is holding his head up on his own almost all of the time and is able to sit on the floor with just a little support at the waist. He is overall more aware and alert of his surroundings. His eyesight has even improved! On Tuesday, 6 hours after the injection, he was finally allowed to sit up and he was looking around the room as if it was the first time he was seeing it. Before we came here we would go through about 10 bandanas a day to catch his drool. He hasn't needed one since Tuesday! And my favorite improvement,....he's smiling and laughing again! It was so hard to get him to smile and almost impossible to get him to laugh for the past month or so. Now he's doing both with ease. It's so great to hear him laugh again.
01/15/2008 - 1st injection complete!
Curtis was returned to us an hour later just as promised. I've been laying in the bed with him and trying to get him to go to sleep. He's moaning a bit like he's in some pain. The doctor said that sometimes patients can get a bad headache after receiving stem cells. So I'm laying there with him and talking to him and singing to him when I thought about another boy who said a word just after he received his stem cell surgery. So I said to Curtis,..."I Love....." and he finished by saying "you" just like he used to!!!! He hasn't done this in 3 months! I can't tell you how happy we were to hear his voice again. We did this 3 more times and of course he wouldn't do it again while the video camera was on. But don't worry. We have plenty of time and I'll bet he'll start saying some other words again too. Today was a success. Thank you so much to everyone for your support and for your prayers.
01/14/2008 - 1st injection
They just took Curtis to the OR for his first injection. It's 10:45 am, Tuesday January 14th. He was smiling before he left. Please see the photo gallery. I'll post again when he is brought back to the room. Pray for him.
01/14/2008 - 1st Stem Cell Injection
We just found out that Curtis will receive his first Stem Cell implantation tomorrow, Tuesday January 15th, at 9:30 am. We are nervous and excited! I'll post another update tomorrow evening to let everyone know how is he doing.
01/11/2008 - Newspaper article in China Daily
Paste this link in your browser to view the newspaper article shown on the front page of the China Daily.
http://www.chinadaily.com.cn/cndy/2008-01/12/content_6388755.htm
01/11/2008 - Update from Beijing
Hi Everyone,
It’s 4:30 in the morning, Saturday January 11th. As you can tell, I’m not quite adjusted yet to the 13 hour time difference. We arrived safely on Wednesday at 3 in the afternoon. Wen and Cindy were at the airport to meet us. Wen is Vivian’s assistant and both are our international coordinators. Cindy is Curtis’ occupational therapist. Everyone is so nice and helpful and they absolutely love Curtis. They all say that he is fat but they mean it in a good way!
We met with all the nurses and Dr. Xi when we first arrived at the hospital. Linda and Yolanda seem to be his main nurses. They both speak very good English. Then they left so that we could get some sleep. I don’t think that I’ve ever been as tired as I was at that point. Thursday they started giving him his medicines. I didn’t realize how full each day was going to be for Curtis. He will be getting a significant amount of medicine each day in order to prepare him for the stem cell implantation. He’ll be hooked up to the IV for about 6 hours each day. We started Curtis’ therapies yesterday. He will see Mark for physical therapy at 10am and he’ll see Cindy at 2pm for occupational therapy. He will receive these therapies Monday through Friday. He also receives TCM (traditional Chinese Medicine) every day. This is massage and heat therapy. I think I want a turn next! The first day of therapies was a very busy day. I was also interviewed today by a reporter! She works for the China Times which is the only English speaking newspaper in China. She said that our story will be on the front page of today’s paper! While I was being interviewed, Wen took Mom to the local supermarket - Carrefour. She said it was a very interesting experience.
We will find out on Monday when Curtis will receive his first stem cell injection. It will be either Tues, Wed or Thurs. After he receives the injection he will have to lie still for 6 hours. That will be a bit difficult but the doctor said they will give him some medicine to help.
I’m trying to send Mom out today to get some fresh air and to see the Temple of Heaven. It’s only a 15-20 minute walk from the hospital. I’d love for us all to go but it’s just too cold to keep Curtis outside for that long.
We are doing very well but we miss our friends and family very much. We were able to talk to and see Dad, Paul and Ava and Ellen a couple times already thanks to our webcams and Skype. Thank you Dad for setting that up! I will write again as soon as we have more news. I have posted a couple of pictures to the gallery. My camera battery died so I wasn’t able to take more. One picture is of Curtis and his physical therapist, Mark. The other is of the breakfast that I’ve been enjoying each day! I’ve been told it’s a traditional Chinese breakfast. I’m not sure what it is but its good!
With Love,
Mom, Donna and Curtis
P.S. - Thank you so much to everyone who helped make this trip possible for us. We couldn’t have done this without the love and support that you all have shown us.
01/08/2008 - The Bay Pony Inn’s Lifeline Dine…An Abundance of Holiday Humanity!
The evening of Saturday, December 22nd was nothing short of incredible. The sumptuous meal and friendly atmosphere provided by the Bay Pony Inn of Lederach PA was outdone only by the generosity and merriment of the over 130 guests in attendance to provide their support to Curtis.
The evening began with the melodious sounds of local jazz band, The Cat’s Pajamas. Throughout the event, guests had an opportunity to bid on over 35 silent auction packages including sports memorabilia, spa packages, items of technology, golf packages and various social packages including limousine rentals and restaurant gift certificates, to name a few. Additionally, guests were able to mingle with Curtis and many members of his family including his mother Donna, his father Paul and his sister Ava.
Over 20 staff of the Bay Pony Inn, all who donated their time and talents to the evening, supported the event. Toward the conclusion of the event it was learned that a total of @ $10,800 had been raised for Curtis during this evening alone. A wonderful exclamation point was placed on the end of the evening when the wait staff of the Bay Pony Inn presented Donna with their entire collection of gratuities that they had earned during the evening. The kind gesture pushed the total amount of dollars earned during this one evening over the $11,000 mark.
What began as an offshoot of the Pay It Forward Project, resulted in a dinner and a silent auction that netted proceeds IN EXCESS of $11,000 directly to Curtis.
01/07/2008 - CBS NEWS AIRS CLIP ON CURTIS
Paste this in your browser to view clip
http://cbs3.com/local/Curtis.Anthony.Batten.2.624946.html
Local Boy Plans To Fight Rare Disease Overseas
Reporting
Lesley Van Arsdall DUBLIN, Pa. (CBS 3) ―
A Bucks County boy battling a rare disease is taking a trip across the globe to continue his fight for survival.
5-year-old, Curtis Anthony is leaving for China Tuesday morning to get treatment for a rare neurological disease that is slowly killing him.
"Basically he's missing an enzyme needed to break down toxins in the brain so that you slowly die," said Curtis' mother, Donna Kapper.
Curtis first started having seizures when he was three, but was not diagnosed with Batten Disease until last April and his condition has deteriorated quickly.
"He doesn't talk, walk with out complete support and he's fed with a feeding tube. I just thought we'd have more time then from April we've lost so much," said Donna.
In China, Curtis will be the third patient at the hospital ever to receive injections of stem cells, aiming to slow the progression of the disease. A treatment involving stem cells is only in clinical trials here in the U.S.
"If we have a good outcome maybe, it will give them a good reason to use stem cells here," said Paul Anthony, Curtis' father.
Now nearly blind, his only source of fun comes from a hot tub donated by the Make a Wish Foundation, but his parents are hopeful after his treatments they will get to hear something they haven't in a while.
"Hearing him laugh. We're missing him smile ," said Donna.
Curtis's trip to China will be the first of three, each costing fifty thousand dollars.
To find out how you can make a donation go to curtisanthonyshope.org.
01/05/2008 - ABC NEWS AIRS CLIP ON CURTIS!!
Paste this in your browser to see the video:
http://abclocal.go.com/wpvi/story?section=news/local&id=5871560
This was the story:(Please note: They mistakenly reported that the stem cells would be injected into Curtis' brain-they will actually be injected into his cerebral spinal fluid.)
WARRINGTON, Pa. - January 4, 2008 -- A Bucks County family will be heading to China next week to get treatment for a deadly neurological disease that is slowly killing their young son.
Curtis Anthony's parents have watched their 5-year-old quickly deteriorate since he was diagnosed with Batten Disease last April.
"He's missing an enzyme which is needed to break down toxic build up in his brain cells," Donna Kapper, Curtis' mother said.
The degenerative neurological disease is causing him to go blind. He can no longer, eat, walk or speak.Story continues belowAdvertisement
The disease is usually fatal by age 12. When Curtis was not selected for the only clinical stem cell therapy trial reportedly being done in the U.S. to treat Batten Disease, the Dublin couple found a hospital in China that would do it.
"It's hope for us," Paul Anthony, Curtis' father said.
"We knew it's not a cure, but we hope it will slow or stop progression of this disease," Donna Kapper said.
"On the first of possibly three trips, doctors will inject stem cells into Curtis' brain during an eight week stay in Beijing. Each trip costs about $50,000 dollars.
Mom's friend Ellen determined the best way to raise the money was to get one dollar from 50,000 people. She launched an e-mail campaign to do it.
So far 900 people from 33 states and three countries have donated $58,000 for Curtis' treatment.
"If we can give that to him right now and give him hope for the future, then what a gift," Ellan Kozac said.
Curtis' grandmother, Nancy, will accompany her daughter and her oldest grandson to China on Monday.
"We're hoping for so much, to hear him laugh again," Nancy Kapper said.
Curtis' family hopes the controversial stem cell treatment will be a lifeline that buys him more time while scientists seek a cure.
To donate, please visit http://www.curtisanthonyshope.org/
For more information on Batten Disease visit http://www.BDSRA.org
01/02/2008 - Our First Financial Goal Has Been Reached!!!
In less than 7 weeks we have hit our first financial goal of $50,000!!! And just in time!! Donna and Curtis (along with Donna’s mom Nancy) will be making their first trip to China on January 8th so that Curtis can begin to receive stem cell treatments. As most of you know, we have been raising this money to allow Curtis’ family to pay for this treatment and travel costs associated with this 8 week stay. At first the goal seemed impossibly unreachable, and the amount of money needed seemed too much to ask for. But with the support and incredible generosity of people all over the world, we are so thankful to report that we can now pay for this initial and vital trip.
To say that our family is overwhelmed is an understatement. We have no idea how we will begin to thank each and everyone of you for your support (both financial and emotional) over these last few months, but know that each time we look at Curtis, we are reminded that he is clearly touched by angels and we are optimistic about his first treatment. We know this journey would be much more difficult without the kindness we have experienced.
As we make our journey across the world, we know that Curtis’ needs will continue to grow. We anticipate that this will not be our only trip to China and the cost of the next treatment will probably mirror the current costs. We know we will have to provide various new equipment to transport him around as he continues to grow and of course, hopefully improve. We will need too add various therapies to his regiment when we return home to continue what they will be starting in China. We know that medications, care and continuous monitoring will be a financial strain that we will need to embrace so that Curtis can have every possible chance to fight this disease.
We will be continuing our fight for Curtis and we will continue to raise money. If a new treatment is discovered we would like to have money available to donate for research. We would like to know that we could help, and hope that in our lifetime there is a cure for Batten’s Disease. We thank you for all that you have done and hope that you continue to Pay It Forward on behalf of Curtis Anthony.
01/02/2008 - CHARITY BONANZA FOR CURTIS!!
THE BARN AT BIRCHWOOD
TUESDAY NIGHTS BEGINNING JANUARY 8, 2008
5:30 PM to 9 PM
BINGO AND TEXAS HOLD’EM
FOOD AND CASH BAR AVAILABLE
FOR MORE INFORMATION GO TO
WWW.GYPSYFUN.COM
www.barnatbirchwood.com
OR CALL THE BARN AT 610-287-8771
THE BARN AT BIRCHWOOD WILL BE PLAYING BINGO AND TEXAS HOLD'EM THROUGH FEBRUARY FOR CURTIS ANTHONY. CURTIS IS A RELATIVE OF BILL MCMENAMIN WHO RESIDES IN BIRCHWOOD.
COME AND JOIN US FOR A NIGHT OF FUN AND KNOW THAT YOU WILL BE HELPING TO SAVE A CHILD’S LIFE.
01/02/2008 - The Spirit of Giving
In addition to Pay it Forward, several other fundraisers have spread their goodwill to help the Kapper/Anthony Family.
TNS EMPLOYEES IN HORSHAM COOK FOR CURTIS: On November 28th the employees of TNS’ CATI department as well as other Horsham PA employees, hosted a spaghetti lunch to benefit Curtis. The employee “chefs” cooked up Spaghetti and Meatballs, and Meatball subs that sold for $10 a meal. ALL proceeds went to Curtis and $1445 was raised!!! (…the food was delicious too!!)
MOMS CLUB OF DOYLESTOWN – LETTERS FROM SANTA: This year, the members of the MOMs club of Doylestown decided to donate the proceeds from their fundraiser “The Santa Letter” to Curtis. The Santa Letter responds to children who write to Santa ($5 per letter) in a personal and cheerful way. The proceeds they received this year came to $2027. They presented the check to Donna, Curtis and Curtis’ grandmom, Nancy in December at a breakfast in Doylestown. We sure are grateful for Santa’s Little Helpers!!!
ELBOW LANE BOOKS BENEFIT CURTIS: Elbow Lane School chose to help Curtis during their annual book fair this year. Curtis went to Elbow Lane until March 2007 and his little sister still attends school there. The staff at Elbow Lane has been very supportive during this difficult time. They raised $770 during this event for Curtis!!!
LAND-TECH ENTERPRISES INC. “ADOPTS” CURTIS AS THEIR CHARITY:
Land-Tech Enterprises received the Pay it Forward email and sent us a link to their holiday greeting posted on their website. Here is a piece of that greeting:
“Despite all the joy we all endeavor, there are those who are less fortunate and struggle everyday. Last year we started a donation campaign to support a charity or cause during the holiday season. This season we asked all of our management team to nominate a
charity or cause that we could support. We received many suggestions, but one in
particular touched our hearts. It is the plight of a little boy named Curtis Anthony.
On behalf of our family of employees; Land-Tech Enterprises, Inc. will be donating $ 500.00 to ‘The Curtis Anthony Pay it forward Project’ to help Donna and Paul reach their goal of getting Curtis to China. We ask that all those who read this make a donation to this worthy cause.”
We went to Land-Tech last week to meet them at their Holiday Party where they not only presented their check for $500 but also handed us an envelope with $700 that had been donated by their employees! Steve Cohen, VP of Operations at Land-Tech, greeted us with incredible warmth and unbelievable kindness. If we weren’t sure before, we knew then that we had certainly been touched by an angel. Please read more about this awesome company at www.landtech.enterprises.com
12/20/2007 - The Curtis Anthony Pay it Forward Project-How it Started
On November 9, 2007, late at night, I was thinking of how to help Curtis and Donna get to China. The news from Oregon crushed all of us as we thought for sure Curtis would be the next patient in an experimental program based in Oregon. Curtis was not accepted into that program, and as alternatives were explored, we realized a stem cell program in China was the best option. The cost of the first wave of stem cell injections is ~$40,000 and I figured that the family would need at least $50,000 for air etc as family members would be going back and forth to keep Donna and Curtis company over their 8 week stay. So how to raise $50K?? It seemed that we only needed 50,000 people who would contribute only $1. $1 didn’t seem to be asking too much of anyone and the key would be to get the email around to as many people as possible, as quickly as possible. I started with my address book and sent the following message along.
Within 3 days, money started coming in. As of this writing, 41 days later, over 700 people have responded and over $30K has been contributed. We have heard from 33 states and 4 countries including a soldier stationed in IRAQ. Many people have contributed $1, while some have been wildly generous and have contributed over $1000. Some have sent their contact information, some just sent blank envelopes with dollar bills in them. Mostly, we have been touched by hundreds of well-wishers who were moved by Curtis’ story and wanted to help. For all of us close to Curtis, we are touched everyday by the generosity and care we have felt from all over the world.
THE CURTIS ANYTHONY PAY IT FORWARD PROJECT
My name is Ellen Kozac. I am writing because I have this crazy idea that everyone reading this has $1 to spare. Just $1. We need to collect $50,000.00, and I think we can do it $1 at a time. We need 50,000 people giving just $1 so that my little friend Curtis Anthony will have the opportunity to fight for his life.
Curtis is the son of Donna Kapper and Paul Anthony. Curtis just turned 5 years old and is diagnosed with Batten Diseases. Batten Disease was first described in 1826, more than 170 years ago. Batten Disease in the common name for a group of diseases known as neuronal ceroid lipofuscinosis, and is one of the more common of the neurodegenerative diseases. It is also one of the diseases found in a group known as lysosomal storage disorders. At this time there is neither treatment nor cure.
There are five major forms of Batten disease, defined by age of onset, pathology and gene identification.
Batten Disease is rarely diagnosed immediately and is often mistaken for epilepsy, mental retardation, retinitis pigmentosa, even schizophrenia in adults. An ophthalmologist can observe pathological changes in the retina. This often provides one of the first diagnostic clues. It’s onset is characterized by beginning vision loss, seizures, clumsiness, personality and behavior changes. Batten Disease causes continuing physical and mental deterioration leading to death.
Curtis was tested to participate in an experimental stem cell program in Oregon and over this weekend was rejected because he failed to test higher then a 12 month old. Curtis is a magnificent delicious child and Batten Disease is sorely under-investigated and thus under funded in research monies. The Anthony family will need at least $50,000 to travel to China to participate in a stem cell experimental program there. Like most families, Donna and Paul just do not have the funds to make this happen. Donna and Paul are my friends and are amazingly dedicated, loving, working parents-just trying to get their son help. Time is running out. PLEASE help.
This is how we’ll make this work. Just email this letter to EVERYONE you know. EVERYONE in your address book and ask them to forward it to EVERYONE they know. It will turn into 50,000 people in a flash. This is easy. Curtis and his family will have the really hard part. Today is Friday November 9th, 2007. Let’s see how long it takes us to help them. As of Dec 14th we are at $23K!!!
Since Donna is overwhelmed, please mail your $1 to
The Curtis Anthony PAY IT FORWARD PROJECT
C/O E. Kozac
20 Red Sunset Dr
Glenmoore, PA 19343
If you are writing a check and treating this as a gift, please make it out to Curtis Anthony. If you are looking to make a tax-deductible donation, please make your check out to Curtis Anthony’s Hope.
Please make sure to include your name and address so we can be sure to include it in our thank you as soon as we reach our goal. If you are interested in getting updates, for now, just email me. Curtis’ website is now up and can be reached at www.curtisanthonyshope.org
Ellen Kozac
ekozac@dejazzd.com
12/18/2007 - The Bay Pony Inn's Lifeline Dine
Come show your support and meet the family!
Saturday, December 22nd
5:00pm to 8:00pm
The Bay Pony Inn
805 Old Skippack Pike
Lederach, PA 19450
Enjoy a Delicious 3 Course Dinner
Only $35.00/per person (does not include taxes)
Beer and Wine included
Silent Auction and Raffle
Benefits The Curtis Anthony Pay It Forward Project
For Reservations call 215.256.6565
WALK-INS WELCOME
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