Golf Tournament, Poker Run

We have had to push the golf tournament back, due to lack of volunteers. We want to make sure this is a great day for everyone so we are looking at a day in October. We hope this is not an inconvenience to anyone. Please let us know if you would like to volunteer.
We could use a few more door prizes.
We are also canceling the poker run due to lack of interest and volenteers. We may hold one in the future.

Golf Update

The golf tournament is coming along great, we still need a few hole sponsors and some door prizes. If you would like to sponsor a hole or donate some prizes please contact us.

If you are going to get a team together please get your forms in as soon as possible.

Please click here for more information on the tournament.

Update on Feet

Beth phoned today and said Haley is doing good, but her Left foot has an infection in her toe. Beth said it was not to bad and she is handling it well. She had therapy today after swimming and she is tired.
As most of you have read Haley has to have a test this summer as soon as the money is raised, the cost is $7000.00. Beth got the name of the test for me, it's called Spastic Paraplegia Work up. Basically its blood work and they are talking about doing another muscle biopsy. They have tested her for Mitochondrial DNA disorder a few years ago (it was negative) but, they want to run the test again.

We Need You!!

Interesting in lending a helping hand to Haley’s Heart?

What: Meet and Greet

When: Sunday June 22, 2008 @ 3:00

Why: To explore the options of either becoming a board member or volunteer for the local Haley’s Heart organization here in Pickens County.

Where: Rock Ridge Welcome Home Center located here in Easley at 205 Lutsen Drive.
Directions:
Take Hwy 123 through Easley.
Exit at the Hwy 8/135 exit.
At the end of the exit ramp, take a LEFT at the light. Get in the right lane. Go one block.
Take a RIGHT at the 1st light onto City Court (the CVS pharmacy). As you turn, the car wash will be on your left.
Just past the car wash, take a LEFT onto S. 5th Street.
Several hundred yards down that road, you will take a RIGHT (it is the only way you can go). You will be on Old Stagecoach Rd.
Rock Ridge is approximately 9/10ths of a mile on your LEFT. The Welcome Home Center is on your LEFT as you enter the community.

If you have any questions please contact
Daniel Clayton @ (864)367-9336 or Becky Wood @ (864) 593-4888.

Golf Tournament update!

Just wanted to update on the golf tournament.
1st Annual Haley’s Heart Golf Tournament
Smithfield's County Club
100 Pine Ridge Drive
Easley SC 29642
Monday August 25, 2008
Registration 1:00 PM
Shot Gun Start 2:00 PM
Directions
From Hwy 123 take Rock Springs Road (at Rock Springs Baptist Church) follow 1.5 miles to Sheffield Road Turn Right. Go to stop sign turn Right then Left on Pine Ridge Drive into the Country Club.
Cost is $260.00 per 4 man team (Registration Form)
Price includes cart & green fees, door prizes, golfer gift pack, tournament prizes and lunch.

Courtesy of Norris Ford
Hole in one 2008 Ford Escape
Closet to the Pin:
Set of Ping Irons
Computer Package
12 dz Pro V 1 Titleist Balls

Additional Sponsorship Information
· Hole sponsor $100
· Player Gift Bag Sponsor
· Longest Drive
· Raffle Prizes
· Cash Donations
Please feel free to contact me for more information at haleysheart@bellsouth.net

Walking Update

Haley is feeling great! She can't feel the bottom of her toes and doesn't know why she can't walk. So Saturday night Beth heard her in the hall saying "I'm walking to the bathroom, I'm walking to the bathroom" Then heard her falling and saying "I thought I could walk to the bathroom" She was fine, but she knows now.
An answered pray. Haley was given a wheelchair by a family friend. It fits her great. It belonged to the girls grandmother and she was a petite lady. They are getting the batteries charged and looking for a seat cover, the seat if black and they want to make it cool for Haley.

Todays the surgery

I will be trying to keep you posted on Haley's Surgery today. I'll be in and out so I'll do the best I can. Beth will text me and I'll post
9:40 am She will be going back in a few minutes.

10:08 Shes out. They could not do the reconstruction. The did the toenails and a little around the sides.

I'll post how she is doing at home later today.

I went by to see Haley and she is doing great. She knows she can't walk for two weeks, she not happy about it but she said she'll be good. She was sitting in the recliner watching a movie so she didn't talk a lot. I forgot my camera so Beth said she would email me a photo tomorrow.

They were not able to get all of the wart so they will do it again. I'm not sure when.

Up Coming Surgery

Haley will finally be having her surgery on her feet on Friday. They will be removing a wart and cutting the nerves in her toes. They may or may not do the reconstruction of her toes. They want know until Friday. She is having the surgery because of repeated infections and pain. If you have ever seen Haley walk you know that her toes scrap with most every step. So her toes take a lot of punishment.
I hope to post the time of the surgery on Thursday.
Beth also told me today that Medicaid denied the wheelchair. So they have to start the whole process over. Without a dignoses it's hard for them.
So please remember to pray for Haley and her family.

Haley came to see us today

Haley, Bri, Beth and Rick came by to fix our sink today. Bri is selling some of my pocketbooks to make some money and Haley wanted to sell some so I had 2 different styles with horses on them so I gave them each a different style to sell. Haley was into everything, but she always is. She just makes herself at home here. She looks goods, she is having some problems with her kidneys/bladder.

I snapped a picture of her talking to Mr Clyde. Haley just loves to talk to Mr. Clyde and Mr Clyde loves talking to her.

Golf Tournament Update

The Golf tournament will be August 25 at Smithfield County Club. You can download your entry form or sponsorship form here.
We are still in need of

1. hole sponsorships @ $100/hole
2. longest drive cash or prize
3. closet to the pin cash or prize
4. Hole in 1 cash or prize

If you have any question please contact us.

Check back often for updates.

Haley in the news

The Greenville News did a great article on Haley today. Click here to check it out. I want to thank all of the drivers, Outback and Steadys for all they have done for Haley.

Haley went to the Zoo today with her class, Beth said she is so tired. Bri is at camp and she is home sick and was a little dehydrated, the nurse called Beth today to let her know.

Fundraiser Updates

The golf tournament is coming along great. We will have information on signing up and sponsorship soon.
The Poker Run has been changed to September. We will have the date soon. I want to check out other activities in the area.
We are also starting the plans for another NASCAR Auction.
We are looking for volunteers for all of the events. If you would like to volunteer, donate door prizes, or if you have items for the auction please email me with your information.

Doctor Update

Haley has been to both doctors this week.
The Nephrologist will be doing an Ultrasound on April 30th. He wants to try to fix problems with bladder before they deal with the hypertension, that is from the kidneys and not the heart. It's all from her neuromuscular disorder.
The Podiatrists will do the Surgery on her feet May 23rd. They will cut the nerves where the toenails go into the toes. They will possible do reconstruction of both big toes due to deformity from wear & tear on feet. Haley drags her toes when she walks, even with her walker.
Please pray for Haley and her family as they go through the next few months.

Update

Haley will be going to the Nephrologist on Monday and she will have her surgery on her feet on Tuesday.
She still has several hours of tutoring left to be up to date on her school work.
We still have the gold car left to sale.

I will have more information on the poker run next week so check back.

Haley was over yesterday and in true Haley spirit she was pushing herself to be like everyone else, no walker. She has been sick with a respiratory infection and on antibiotics. So she was full of energy and happy to be feeling better.

She was tyring to get more attention from me by telling on my daughter, she was twisting the facts just a little, but in the end she fessed up and she stayed right with Brent the rest of the day, except to sell one of the race cars.

Haley helped me sell the blue race car body we had for sale. After Randy Turner bought the car he wanted Haley to sign the car. If you look beside Haley you will see her signature.

We still have 1 car body left.

Haley will start her riding therapy tomorrow. She has not been doing it for quite a few months. I can't wait to go see her riding again.

Doctor Update

Haley will be getting a heart Monitor. The doctor does not think her Hypertension and tachycardia is from the heart. Haley has been classified with Renal Disease for a while. The cardiologist wants Haley to see a Nephrologist to determine if this is coming from her kidneys and Beth is hoping for a diagnoses.
Haley looked a little pale Friday night when I was over but she was not slowing down. She was outside playing and then online with her Webkinz. I got plenty of hugs and kisses from Haley & Bri, they are both growing so fast.
Check back this week for updates on upcoming events.

Haleys Beeping Heart

Haley goes to the Cardiologist Thursday 9:30 AM. They will be ordering a new heart monitor for her. I will update on this after Thursday.
They are also looking at outpatient surgery next week on her feet. Her nails are cracking a her toes are getting infection so to cut down on this they are going to do surgery. I'll update more on this as information become available.

Haley Update!

I just got off the phone with Beth. Haley's heart is, as Haley puts it, "beeping" again. The doctor is supposed to call Beth on Monday.
Haley was not going to tell Beth. Beth was watching her do her homework and she would put her hand up to her neck and then back down to write several times. When Beth asked what she was doing she told her she was scratching her neck. But when Beth looked at her and said "Haley Ann whats wrong" Haley told her she was "just seeing how it was beeping." Haley told Beth she did not want to go to Charleston again unless it was just to stay in the hotel.
Beth said Haley is having nose bleeds and is up most every night. She is still going to school most days and trying to have a normal live. Haley wants to be like everyone so badly that she was not going to tell Beth about her heart. I guess she lived with it racing for so long that she thought she could do it again. I'll post more when Beth talks to the MD. Beth really thought that thing where going good for Haley for a change.
Please Pray for Haley's heart to heal and for Haley not to be afraid for what the future may bring.

Sorry It's been so long

Sorry it has been so long since I've posted. I talked with Beth yesterday and in the background I could hear Haley and Bri singing. Beth was taking them to school Haley was going on a field trip. I am so glad she is getting to enjoy thing that others take for granted. She still needs her rest and to stay calm at times but Beth said things seem to be as normal as they can be with Haley. Beth is working on Haley's education plans with the school. Nothing has happened yet, the meeting for Monday was canceled. We all just want Haley to get a better education than what she is getting. Maybe by next year she will be on track and have a game plan in place.
I'll update again soon.

Haley is so tired

Went by to see Haley and Bri on Friday night. Haley had gone to school everyday and had PT in the afternoon. When we went in Haley was sitting the the chair crying and Beth was trying to get her medicine together. I went and sat in the chair with her and started rocking her and we got her new dog to sit with us for about a minute. Beth brought us her medicine and a sippy cup. after her medicine Haley laid in my arms and went to sleep until I sneezed and woke her up.
Haley just can't take school everyday when she has been up at night with spasms and then has to do PT in the afternoon, it's just to much on her little body.
Please pray that the money comes in for the test that she needs, and for restful nights for the family.

Update on Haley

I spoke with Beth yesterday. Haley has been up every night this week. She is waking Brianna up instead of Beth because she think "mommy needs west". Beth has tried to explain that she needs to know what is going on at night with her and Brianna needs her sleep. Haley and Bri need separate bed rooms so bad.
The test that the MD wants to do has to be paid for up front $7000. The MD is still looking for organizations to help pay for the test. If they can get part of it paid for then he thinks he can get payments set up.
I am requesting prayer for Haley, Bri, and Beth to have 2 complete nights of sleep and the money for the test.

Upcoming event

We are working on a golf tournament.
A poker run will be held July 12th in Pickens County. Detail coming soon.
For more information on either event please contact us.

More Pictures from the Dinner

Dinner with the Drivers

Last night was great!!!! Haley and her family were able to get together with some of the greatest drivers our area has to offer.

Haley was greeted by all of the drivers when she arrived, and was presented with a Build A Bear named Haley by one of the drivers. Another driver gave her a nice racing toy that I am sure Beth will be hiding from time to time just to have a little peace and quite. Brianna had it going at the table last night and I was ready to hide it.

Haley said grace and the food just kept coming. Outback of Easley and Steddy's Grill of Easley proved the meals for the drivers and winning bidders. The drivers had extra family members and crew members on hand for this night to remember. After Dinner Haley took a ride around the parking lot in a race car, she wanted to go faster and do it again.

Beth has had a hard week and the stress has really been showing, but last night she was able to see that she is not in this fight for Haley's life alone. She was able to relax and laugh for a little while, she even ate her meal. Haley has a test coming up that insurance is not going to cover, the cost is $7,000. It has to be sent to Spain. Haley has not been sleeping good this week she has had a lot of night spasms, so Haley and Beth have had sleepless nights this week. The doctors also told Beth that Haley has to be careful about falling due to her lack of muscle tone. Haley not falling is like most people not breathing. Falling is just a part of her life. It almost means no walking.

Thanks guy and girls for making this a great evening for this family.

I think this family will be a racing family for years to come.

Thank You!

I want to thank everyone for coming out Saturday and making this a great start to an annual event. The total is not in yet but it looks like we will be paying off Haley's in town medical bills and still have a little left over. We are just praising God for the weather and the turn out. We hope everyone had a great time and look forward to seeing you next year. Haley is sorry she had to leave early. She was having a nose bleed again. She looks forward to seeing everyone at Outback on Thursday night.
Please keep coming back to the site for more information and to see what we have planned next.

Keep Praying

Haley has been to school on Monday and again today. She is having nose bleeds again, and this will be another trip to to doctors office next week. Beth said today has been a good day because she slept all night last night.
Everyone needs to pick up a Pickens County Courier, February 13 edition. Haley is the Valentine story.
The Auction is coming along great. Be sure to be there for a day of fun.

This Week

Sorry about the delay in updating but I've been busy.
Haley went to school 2 days this week and did great. Beth was nervous and so was Haley. The last time Haley was at school they had to call Beth to come and get her. Her heart was racing and Haley was not doing well. When Haley got out of the car she looked at Beth and said "I'll be alright"
She is one of a kind.

The auction is only 13 days away. Be sure and put it on your calendar. I will be adding more items on Sunday.

Toothless

Haley had 3 teeth pulled yesterday. She lost 2 front teeth and the tooth her cap feel off of. But true to form she has not let it get her down. Beth she is really doing great.
Bri is still not feeling well. She is still coughing a lot.
Haley will go to school Monday and Tuesday so please keep her in your prayers.
I hope to have pictures of here with her missing teeth this weekend.

Haley's Recovery

In true form Haley, she is recovering very quickly and happily. Brianna is sick today, so Haley is with me while mom and Bri are at the doctors. We stopped at Sub Station and Brent hand delivered to the car Haley's favorite sub, pickles, chips, drink and surprised her with a cookie. I had to run in a spray everything with Clorox Anywhere so Haley would not get sick.

Haley's swallowed her cap over the weekend so she will start an antibiotic so she can have it replaced next week. This is a good thing because the doctors are going to let her do 2 half days at school next week. I am amazed at the sweet little blue eyed girl. She is so strong.

Here are a few pictures from the last couple of days.

More Notes from Nana

Little Haley Ann Chapin has lived her entire seven years of life in the Easley Area. Many folks recognize the bubbly little blue eyed blonde being pushed in her tiny wheel chair or on a good day, motoring along in her little walker. In area restaurants, grocery stores, Drs offices, etc, Haley is on first name basis with dozens in the community. This past Christmas there were church groups and individuals that made sure Haley and nine year old sister Brianna, along with Mom, experienced a blessed holiday. The Ruth Sunday School Class from Rock Springs Baptist Church held a party for the little family and showered the girls with gifts. Typical Haley response was to announce at the end of the party, as she struggled to stand erect with Mom help, "I thank each lady, I love each lady and God loves you too. Now everybody has to Let me hug them".

This kind of gratitude and joyful outlook on life is missing in far too many of us these days because this is a tough world we live in. Every one of us struggles each day with both the small and the large complications of life. But most of us can wake up each morning and get out of bed and go about our business unassisted. Most of us visit the medical facilities infrequently, and are by and large free from constant pain. Not so with Haley. Since the age of 18 months when she began to exhibit symptoms, there has been an ever increasing progression of muscular problems. She has spastic palegia, a form of dystonia, heart and kidney problems only to mention some of the complications of a condition that numerous Doctors from several different states and hospitals have been unable to give a exact name too. Name a type of medical specialty and Haley has seen them. Name any painful, invasive diagnostic procedure and she probably has had it. Through all of this, her personality is outgoing, mischievous, happy, compassionate of others and loving. How can that be? She will tell you that Jesus lives in her heart and keeps her happy. You cannot help but love her, even on a day she's a little tired and cranky.

This past weekend was one of the most difficult Haley and the family have ever faced. On Friday, Haley underwent a seven hour heart procedure in Charleston. The haleysheart.org blog so lovingly designed by family friend, Lynn James, was updated throughout the day. Friends and family all over the country were praying and Doctors discovered her problem was more complicated than originally thought and the afffected area was the actual center of the heart. They believe that most of the problem has been corrected, but can't not guarantee this. Time will tell. In the meantime Haley is recuperating at home and Mom needs prayers and patience as she attempts to keep the bouncy child calm and resting for the next few weeks as her heart heals.

One of Haley's greatest pleasures in life has been horses and she has taken therapeutic riding lessons at Eden Farms through a program called Happy Hooves. This has been made possible for her by generous donations. Many of the outstanding medical bills have been paid through the efforts of folks like Lynn James and others who have held yard sales and other events to raise money. For several years now it has been an almost overwhelming situation for Haley's mom. Unable to work on a regular basis due to Haley's care needs and particularly this year as Doctors have home bound Haley from school, it has been anything but easy to be a single mom to two little girls. By God's grace, this little family is doing well with the support of loving extended family, friends and a caring community.

We are asking once again for the community to help out. When you go to Haley's blog you will read about an upcoming NASCAR auction to be held for Haley. Please come and be a part of this. One of the greatest needs is for a wheelchair accessible van to accommodate the motorized wheelchair that Haley is scheduled to receive in March.

The family would like the community to know how much they appreciate the love and support shown by everyone. Most of all thanking those who are holding Haley and the family up in prayer. This child's future is unknown and each day is precious. Being around Haley is like holding a ray of sunshine in your hand. She will teach even the hardest heart to soften and find joy when they look into her eyes and see her smile. Her antics and compassionate heart experiences have been written about in a Chicken Soup book and the author of this article is writing a book entitled the Heart of a Child..........how Haley teaches us "unless you become as a little child you cannot enter unto the kingdom of Heaven."

Update

Haley has been up walking with the walker a little. The bandages were changed and Beth said she was pitiful. It had a lot of tape because it was a pressure bandage. We found out with the dressing change that they went in both legs. That is why she has been so sore. Haley's voice is coming back and Beth said she is doing good.
Please continue to prayer for her recovery, she still has several weeks to go.

The Day After

Haley only woke up twice during the night. Beth did sleep some after 2:30AM & up @ 7:30 PM.
Haley is very sore around the neck & leg incisions. She has some rashes, they think from the pain medications, so she can only take Tylenol. Haley has had a sponge bath & eaten this morning. She can't walk for a few more days. She has thick bandages on her upper legs & neck. Her chest has some sores from where is electrodes were, she has very tender skin. She is not crying and is very sweet. She is really handle this good. She is sleeping in the recliner now. Beth was going to lay down for awhile, while the angel is resting.
I hope to have a few photos this afternoon.

To Day's The Day

7:40 AM Haley has been taken back for Surgery.
8:40 AM Surgery started
9:00 AM No updates yet.
9:35 AM Exploratory is over and everything looks OK. They will now start the shocking of the heart and trying to fix the arrhythmic pattern of the heart. This will be done by cauterization and abrasion
10:30 Procedure is in progress and Haley is doing good.
12:43 PM They have found a few of the patterns, but are still looking for the "big" one. Her breathing is fine. They will not go longer than 8 hours on her. Beth said this morning she was laying on the bed with her hands behind her head, saying "mom are you ever going to stop kissing me?" She had the nurses laughing. Please pray for Beth to have comfort.
1:50 PM They found the problem and they are block & rerouting it. After that she will have to lay flat for 2 hours.
2:35PM Haley is in the 1st recovery room. Beth can't go back until she gets into the next recovery.
4:20 PM I spoke with Beth at 4:00 PM and she had spoke with the doctor. They do not know if this will fix the problem or not, only time will tell. Haley had to go to the CCU recovery due to Pain and Vomiting. She is in the step down recovery now. Beth said she is will break are heart she feels so bad. She will be released at 8PM to home. She can not ride in the car seat and they have to go slow. She will be under the care of the Pediatric Cardiologist in Greenville.
Please pray for a safe trip home and a comfortable one for Haley. They will give her something to help with the car ride home.
I will post again tonight if I hear anything else, if not I will update around noon tomorrow.
7:15 PM They are leaving the hospital now.
8:53 PM Beth just called, they are just outside of Columbia and Haley woke up when they stopped to get gas. She was drinking a juice and she is doing fine. Beth said she is just being so sweet. Beth said Bri is with a friend and is being treated like a princess. Beth will call in the morning for an update.
I will be printing out the post for Beth the read to Haley when ever she wants to hear what everyone is saying so post those comments for Haley.

Haley's Pre Op

Haley went in for her pre op today. Everything went good. Tomorrow morning they will take her back around 6:48am. The Surgery will start around 7:45 - 8:00. The surgery will take 4 - 6 hours. I will post here ever time I get an update on how things are going. So check back every hour or so.
Tonight they took her out to eat and let her order anything she wanted off the menu, she loved that. She sounded in good spirits and was having fun.
Thank you for all of your support and prayers.

Haley's Surgery

Haley will be leaving for Charleston this afternoon. She is scheduled for her pre op tomorrow morning and then her Heart surgery will be Friday Morning. As soon as I get an update from the surgery I will post it. Please continue to pray for a safe trip to and from Charleston, the surgeons and the surgery to be a success.

Haley

NASCAR Memorabilia Auction

Saturday, February 23, at 5 Point Fellowship Church, 315 West Main Street, Easley, SC 29642
Come join us for a day of fun and a chance to go home with a great collectors items from your favorite local or NASCAR driver. All proceeds will benefit Haley's Heart to pay off medical bills for Haley Chapin.
Auction by Hendrix Auction Mike Hendrix Sr. SCAL3536
Check back often to see new items as they come in!!!

Well have BBQ plates for $8.00, Meet & Greet with Local Drivers, Snack and Race themed party items, Race themed purses & totes, and much more to come.

We will also have an auction for dinner with a driver to be Thursday, February 28th 7PM at Outback Steakhouse, Hwy 123, Easley, SC

Driver to be auctioned:
Amanda Lynch
Jeremy Burns
David Roberts
Randy Porter
Ralph Carnes Monica Blount

Event Start at 10:30

Door Prizes all day!!!

Meet and Greet the Drivers:
Drivers scheduled:
Amanda Lynch
Randy Porter
Jeremy Burns
Ralph Carnes
Monica Blount
Kenneth Headen

BBQ by Terry Whiteside 11:00-until

Cars to be on display: (tentative)
Amanda Lynch RandyPorter JeremyBurns Ralph Carnes Monica Blount
Kenneth Headen

Auction sign up 12:30 until 1:30

Auction 1:30 - until


Please bring A non perishable food item

Click here for direction to auction


For more information contact Lynn 864-360-4324 or Daniel 864-859-4104 or email.

Welcome To Haley's Heart

Hello and Welcome to Haley's Heart! Until I get the home site up and running we will be using blogger to get the word out.
Haley's Heart was founded to help pay off medical bill for one special little girl Haley Ann. When we have paid off all of Haley's medical bills and purchased a wheelchair assessable van we hope to continue to help others like Haley and her family that have fallen through the cracks of the healthcare and insurance industry.
This site is dedicated to Haley and her family. I hope you will look around and get to know this loving family and help our cause. Please click on the links at the side for more information on up coming events, ways to donate, photos, and read all about Haley and keep up with her progress.
We would like to thank you in advance for any and all prayers and donations.