Introducing Addy’s Giving Heart

Tonight I am Introducing the Couponing to Disney partnership with Addy’s Giving Heart. Addy’s Giving Heart was created to enable Addy’s legacy of giving to live on through others. Addy’s Giving Heart spreads kindness and encouragement by provide individual boxes to children in the hospital. Sometimes knowing that someone cares is enough to lift a child’s spirit and send them on the road to recovery.

Here are a few of the items you could send for the boxes; feel free to send anything that you would think would be perfect for a child in the hospital (remember no food or latex items):

• Small Craft Kits
• Small Journals or Drawing Pad 
• Coloring and Activity Books &Crayons
• Travel Games
• Puzzles
• Magic Trick Kits
• Match Box Cars
• Action Figures, Animals, & Polly Pockets
• Stress Balls & Slinkies
• Playmobil and Lego Sets
• Socks & Hair Clips
• Stickers
• Playdough
• Coloring Books & Crayons
• Bubbles & Pinwheels
• Small Plastic Cars & Trucks
• Playmobil 123 Sets
• Finger Puppets
• Grow Capsules

If you are interested in donating items to Addy’s Giving Heart, you can mail your items to the following address:

Addy’s Giving Heart
c/o Cathy Hebel
114 Forest Acres Lane
Taylorsville, NC 28681

Addy’s Life Story

Thank you to Kristin for allowing us to share Our Daughters story with you all. Addison is our second child; we have 4 girls. Addy was born 9 weeks early. She was so eager to get here. She had to stay in our local NICU for 3 weeks. Addy was a fighter from the day she was born. She let nothing hold her back. After being home for a few days, we had to take her back to the hospital due to some apnea episodes and not being able to keep her body temp up.

During the next few months, Addy was treated several times due to Apnea episodes.  On one of her visits to the hospital, she caught viral meningitis.  She was then transferred to the closest children’s hospital.  Addy became very sick very fast, spending her first Christmas in the PICU due to a severe lung infection.  Addy was at children’s hospital for 3 months. During that time, she had several lung infections and due to a tiny hole in her heart from being preemie, a blood clot was able to pass through and she suffered a stroke.

We were told by the doctors that they did not know what the long-term effects of the stroke would be.  They told us that there was a chance of developmental delays and seizures.  Addy did have some developmental delays but she got OT, PT and speech and began to blossom. Addy, even as a baby, always had a smile. Even when she could not lift her little head, she wore a smile on her face.

She was so proud of herself when she finally walked at 22 months.  Addy was a tiptoe walker from the start. She never just walked, she danced everywhere instead of walking. It was so precious.  Addy went to preschool for special needs kids due to some of her developmental delays. She loved school.  Addy completed two years of kindergarten. During this time, we started to notice she started to stare off into the distance and having severe not your normal meltdowns.

We were referred to an amazing Neurologist at Jeff Gordon’s Children’s Hospital.  The Dr decided to do an EEG to make sure that what he suspected was the case.  In Jan of 2010, Addy was diagnosed with her first type of seizures. She was placed on her first seizure medicine.  Addy still had that smile on her face. She did not like taking the medicine but knew she had to.

We took a family beach trip the summer of 2010. Addy loved the beach. She and her sisters were up every morning before the sun.  After a week at the beach, we made the 6 hour drive home. We had to stop at Best Buy once we reached our hometown for my husband to grab something.  As I sat in the car with the 4 sleeping children, my then 7 year old said, “Mommy Addy is shaking and drooling.” I jumped out of the car and opened the side door to get to her. This was Addys first Tonic Colonic Seizure.  Her Dr had given us emergency meds to have on hand if this ever happened which we never though it would.  We gave Addy the emergency meds in the parking lot of Best Buy while the ambulance was on its way.

Addy’s first big seizure lasted 15 minutes. At that time, that was the most scared we as parents had ever been.  During the next 4 years, Addy’s seizures became progressively worse. She went from having one type of seizure to 5 different kinds; from 2 pills a day to 25.  Again, during all of this, even the lengthy hospital stays, Addy continued to have a smile. She would sing Justin Bieber for all the nurses and dance down the hospital hallways, even after a day full of seizures.

Addy and our family got the honor of getting picked to go to Disney World with Ace and TJ’s Grin Kids, a local charity that takes several familys each year that have children with a chronic or terminal illnesses to Disney for an all-expense paid trip.  This trip was one of our happiest memories. Addy loved Mickey and Minnie and the fab five. Our family has precious memories from this trip that we will treasure for a lifetime.

In 2012, it was decided by Addy’s doctors that we needed to start testing to see if Addy might be a candidate for brain surgery to possibly remove the area that was causing all of the seizures.  Addy was referred to Duke Children’s hospital where we began the long journey of testing.  Addy had to endure more lengthy hospital stays; she had to have a portacath inserted due to her veins being shot from all the times she had to go to the hospital due to seizures.   Addy had to have several EEGs during which they would take her off her meds so that they could see exactly where the seizure was starting.

In December of 2012, things were getting progressively worse. Addy was having 4-5 larger seizures a week lasting from 10 minutes to an hour or more.   Addy had to go to a modified day at school in her special needs class.  Addy loved school so much that she would try to trick her father and myself and tell us she felt fine when we knew she didn’t just so she could be at school. Addy is the strongest, bravest, most pure of heart person I have ever met or that I will ever meet.

Addy received a Make A Wish from the Make A Wish Foundation. Her first choice was to meet Justin Bieber but her doctors thought the lights at the concert might be too much for her, so she decided on a trip to Disney World. She looked forward to that trip everyday counting down the days till we were to leave on April 3^rd.

On February 24^th 2013, we walked into church. Addy of course was dancing in and waving to everyone.   She went to her Sunday School class and we went to ours. After about 15 minutes, someone ran into the room to grab me and tell me Addy had fallen out of her chair.  When we got to her, Addy started to go into a seizure. We had a PA that attended our church and several EMTs, one of which was her Godfather.

As Addy was transported to the E.R. by ambulance, she had 5 seizures on the way. Once we got to the E.R., they got her stabilized.  Addy had done this several times; she would have several seizures then stabilize and we would be able to take her home after a period of waiting to make sure she did not have anymore.  When we got to take Addy home that late afternoon, she was very tired and out of it due to all the meds, but we had seen all this before.

After being home for 45 minutes, Addy went into another seizure. It was quite severe and she had bitten her tongue as first responders arrived then EMTs. I was allowed to ride in the ambulance but had to sit in the front and before we got out of the driveway, CPR was started.  I prayed and begged God to help my baby as CPR was continued all the way to the ER.  When she arrived at the ER, she was whisked away and I was asked to sit in a tiny room with my sister and mother in-law.

After what felt like an eternity, the nurse who had Addy earlier that day came to get me and she had tears rolling down her face.  I began to yell and scream. I knew then that my precious girl was gone.  When we got to the room, they were still doing CPR. It had been 45 minutes by now. I begged God with all my might not to take her and to please let her stay, but Addy passed away that night.

The greatest joy in life is holding your baby for the first time and the greatest pain in life is having to tell your child goodbye.  My husband arrived and we held our precious girl for what seemed like an eternity. We then had to go home and tell our 3 other small children that there sister had gotten her angel wings that night.

We chose not go on the Make A Wish trip to Disney World as we did not want to take the opportunity away from another family. We will be going in August on Addy’s birthday to do a celebration of life.

My mother and I came up with a way to help Addy’s Legacy live on. She had such a giving heart and wanted so much to give to others. Every time we present a child with a box through Addy’s Giving Heart, we are honoring Addy’s true wish.