Tabitha's Wish

Today I have a special treat for you. The other night I spoke with Mr. Duncan McLindon of Tabitha's Wish. Tabitha's Wish is a special community page on Facebook. But it's not just any community page. It's a page aimed to make a difference.

Tabitha's Wish

When I asked Duncan, Tabitha's father, what Tabitha's Wish was, he told me a very touching story. Tabitha wanted to open a checking account at the small age of twelve. In order to do that, she had to have an ID card. So, her mother took her to the Department of Motor Vehicles and helped her get a non driving ID. A routine part of the process was for the clerk to ask if the person getting the ID wanted to be an organ donor and have that on their card. Without hesitation, Tabitha said yes. Only one thing confused her. She heard someone next to her say no. On her way home, she asked her mother why the man said no.

We don't really know why the man said no, but it could be due to the myths and rumors often spread about organ donation. 

If everyone who is eligible to donate their organs donates, there would not be a list."

~~Duncan McLindon 

Just one week later, Tabitha was rushed to the hospital. One minute she was enjoying a skating party with her friends, the next she was fighting for her life. After diagnosing her with a rare brain bleed, her doctors did everything they could to care for her. Finally, they told the family that there was nothing else they could do to save her and within days she passed away. Since Tabitha had never been  seriously sick before, she was eligible to be an organ donor. When Tabitha's family was asked if Tabitha could donate her organs, the family knew, without hesitation, what Tabitha's wish was. There was no question. Tabitha's wish was to be an organ donor. And her wish saved the lives of seven people. Tabitha's Wish is all about getting Tabitha's story out there, spreading the word about organ donation and helping tell the story of organ donation from the donor's side.  To read more about her story, please visit and like the page: Tabitha's Wish

Remembering Tabitha

Tabitha's father Duncan told me with enthusiasm when I asked who Tabitha was. What were her likes an dislikes? One thing I learned was she loved horses and was great with them. She was a "natural rider."

"She won her first Saddle at 5 years old," Duncan said with pride. She was a child who loved to learn, but also loved Taylor Swift's music. She got good grades and was on the honor roll. She even won a music award in her short life.

Almost 1 year to the day of Tabitha's death, Duncan McLindon started Tabitha's Wish to spread the word about the importance of organ donation and talking to your family members about your decision. He began doing radio and television interviews.Now, Tabitha's Wish on Facebook has over 11,000 followers. Not only is Tabitha living on through the seven people her organs went to, but now thousands of people know about this heroic child. 

The Interview

During the interview with Duncan, I got to ask some questions and learn all about this family and his sincere love of his precious daughter. After talking about this heartwarming story, I had some other questions for Duncan.

Me: What would you say to some who says they don't want to be a donor because they are afraid their own doctors won't take good care of them in order to harvest organs?

Duncan McLindon: A doctor is sworn to do everything to save the life of their patient. Also very few people who die are eligible to donate organs. If you are in an accident and are fatally wounded, the EMTs will work to save you no matter what. They are not part of the Transplant Team.  Also, if you die while the EMTs are working on you, and you have Organ Donor on your ID, the EMTS will continue their life saving efforts (because the organs need the oxygen). With this happening, there's even a small chance of a miracle on the way to the hospital. However, if you are not an organ donor, all life saving efforts stop as soon as death is declared. 

Me: Have you ever been allowed to communicate with any of the families Tabitha helped? As a parent of a child who received a liver, I think about her donor every day. I owe her donor everything. Since we haven't been blessed with thanking them personally, we often pray for the family and the donor.

Duncan M: I've met the little girl who received Tabitha's liver. (Editor's note: See Tabitha's Wish for more stories and pictures of these meetings.)

There is also a story about the person who received Tabitha's lungs.When I asked her what she wanted to do after she got a transplant, she said, "I think I'll dance." 

Me: Why do you think it is important to spread the word about Organ Donation? 

Duncan M: It is important to get the word out so potential donors won't miss the opportunity of saving a life out of grief. Often, when someone close to us passes, we are overwhelmed. And if we never have discussed organ donation, it is likely we will say no out of our grief. Also, once you decide to be an organ donor, it is important to let your family know your wish. Even if you have an Organ Donor card or it is on your ID, if your family says no, the doctors won't do it. Also, if everyone who is eligible to donate their organs donates, there would not be a list.

Me: What do you think Tabitha would say about the success of Tabitha's Wish?

Duncan M:  I think she'd say, "Thank you for making my wish come true."

A Time to Vote for Angel Donor

This year Angel Donor is participating in the Preditors and Editors Reader's Poll.

This is an Internet poll on books of all categories. It is designed to help authors gain exposure for their work and help readers discover the newest books out there. As taken from the Preditors and Editors (P&E) site, "As part of our overall effort to assist and promote writers, we are proud to present the annual Preditors and Editors Reader's Poll".  P&E is also well known for their vigilance in warning authors about publishing scams.

Here is more information on Angel Donor:

Olivia never asked to have a disease like Biliary Atresia. It made her liver sick and only a transplant will make her better. After waiting several months and close to losing hope, she gets the call she's been waiting for. The journey of her life is about to begin.

PLEASE VOTE FOR ANGEL DONOR TODAY in the CHILDREN'S CATEGORY:
http://www.critters.org/predpoll/novelchildrens.shtml

Feel free to add a  comment about Angel Donor. I have been humbled by some of the nice things put up there.  Enjoy, Happy Voting and HAPPY NEW YEAR!

A Photo Display of a Fun Time

It was two hours before it was time to head to the hospital. As we gathered our things that we'd need for the day, I recalled times in the past that a trip on the highway to the hospital was filled with fear and anxiety.

But not today. Not this time. Today was a celebration. It was the annual Holiday Party at the children's hospital where my daughter received her liver transplant. It is a day filled with fun, food, dancing, socializing with the medical team and meeting Santa. It is something my family looks forward to every year. This time it meant a little more to me. As we prepared to leave, I put together a gift bag.Waiting inside the bag, was something I've been working on for years. It was a signed copy of Angel Donor for my daughter's Transplant Team.  

Once at the party, the fun and games began.Instead of medical exams, the children arrived to create their own Santa Hats.  Using foam letters, the kids attached their names to their own Santa hats.

A favorite for my 2 younger ones was the face painting!

There was lots to celebrate. Many children are enjoying a second chance at life. Some are enjoying an oasis away from the chaos of disease. All are enjoying fun family time! 

  

All the kids there looked like they didn't have a care in the world. The kids made new friends, the parents made new friends and a good time was had by all. There was even time for family photos with Santa.

If you are a family who has been struck with a serious childhood disease, what are some ways you and your medical teams have celebrated? With the endless stress during the year, I'd love to hear your happy stories! 

Common Myths About Organ Donation

While there are some extraordinary and uncommon experiences out there, the truth is organ donation is a life saving option when the unthinkable happens. According to facts from the Donate Life Pa website, while about 85% of Pennsylvanians support organ donation, only about 45% are registered. Why? After viewing different conversations on social networking sites, I think alot has to do with myths about organ donation.

#1 -  One of the biggest myths and ethical concerns I see is that people are afraid their lives won't be saved by their own doctors if they are registered organ donors or if they agree to donate their organs. 

Fact : The  medical staff whose job it is to save your life is compeltely separate from the transplant teams. It is not until after death is declared that organ donation is considered and a transplant team is notified of an available organ.

#2 - It is unethical to donate an organ.
Fact: Organ Donation is an acceptable process for most religions. Here is a list of major religions and their position on organ donation found at Donate Life PA's website.

#3 - My organ is going to someone who did not take care of themselves.

Fact: - Most transplant candidates are on the transplant list due to severe diseases through no fault of the patient. In the low instances of drug abuse or alcoholism, the patient must be sober for at least five months before even being added to the transplant list.

There are several other myths about organ donation. Please take a look at Gife of Life Donor Program.

All About Biliary Atresia

In my newest children's book made especially for other children living with liver disease and transplantation, the main character, Olivia, has a liver disease called Biliary Atresia, which caused her to need a liver transplant. In today's post I will discuss just what this disease is, how it is treated and what to look for. 

What is Biliary Atresia?

Biliary Atresia is a very rare liver disease where the bile ducts from the liver are blocked. It is estimated that one in every 10,000- 20,000 live births are born with the disease. In addition to the large bile ducts being blocked, the disease begins to spread to smaller bile ducts. This means bile can't drain from the liver properly. If left untreated, the liver becomes scarred and loses it's function. Treatment is needed as soon as possible. After testing to be sure the disease is in fact Biliary Atresia, a surgery called the Kasai procedure is done in order to regain bile flow. This allows bile to flow, however it can't reverse the scarring of the liver. Often times a liver transplant is needed down the line. 

What are the symptoms of Biliary Atresia?

• Yellowing of the baby's skin
• Yellow eye whites
• Dark Urine
• Pale, white or clay colored stools.

If a child is diagnosed with the disease, there are many places to get support. 

• My first suggestion is to READ, READ, READ. This is the reason I wrote Angel Donor. It is for our brave kids battling this disease. Parents and caregivers, be sure to read about the disease. There are many articles out there. Ask your child's doctors for their favorite resources and books about the disease. 
• Get support online or in person. Ask the hospitals if there are support groups, other parents who are going through this, etc. My two favorite places for online support (which I've also listed in the back of Angel Donor) are: http://www.classkids.org  and http://www.liverfamilies.net. The parents and administrators there are full of information and support. It's great to talk with people who know exactly what you are going through.
• If you feel the need, you can set up a secure, special web page to share updates with the family. The last thing you will be thinking of during a hospital stay is calling all the family members and repeating the update on your little one a hundred times. Once you get a private moment to yourself, you can update the page and everyone will be in the loop. One great website is http://www.caringbridge.org . It is secure, so only people you give the direct link to can access the page.  

If you have found this post in your search for answers about this disease, I hope that I have helped you some. Feel free to comment here anytime. I would love to help in anyway I can. 

Tubie Friends for kids on Feeding Tubes

A hard fact of life for a child in need of an organ transplant is that many of them will need a feeding tube at some point during their illness. The illness often causes the children to lose their appetites and they are no longer able to eat or drink enough on their own. Optimum nutrition is important for the children so they can properly cope with their disease and stay hydrated. It's also necessary to keep their nutrition in the best shape prior to transplantation. Receiving an organ is a serious surgery and the children's body needs as much nutrition as possible to be able to handle the surgery and to be able to heal well afterwards.

So what happens when your child can no longer eat or drink enough on their own? This is when most doctors will order a feeding tube. Your doctor will decide which one is best for your child. It is important to work closely with your child's doctor as each child is different and responds to their illnesses differently. 

Once it is decided your child will need a feeding tube, depending on their age, they might find this to be a trying and scary time. As infants they may not understand what is happening to them. As children get older they may feel self conscious. Whatever your child may be going through at the moment, I came across a great website that may take some of the anxiety and stress out of this situation. 

I stumbled across Tubie Friends. This is a great website where they will get a Tubie Friends Surgeon to gather information and help create a stuffed animal with a feeding tube made especially for your child. It is definitely something to look into if you have a child who needs a feeding tube. I always like to find a way to ease the stresses our kids have to deal with. Check them out at http://www.tubiefriends.com/ 

The Transplant Games of America

It's that time of year again. The 2012 Summer Olympics has the world on the edge of their seats. We've already seen several Golds won by the US. It is a wonderful compilation of all the athletes' hard work, paying off in the great city of London. Congrats to all the Olympic Athletes for jobs well done!

Meanwhile, in the Grand Rapids in Michigan another set of games is going on. The Transplant Games of America. Taken from the official Transplant Games of 
America website, the games are a " a multi-sport festival event for athletes who have undergone life-­saving transplant surgeries and living donors. Competition is open to anyone who has received a solid organ transplant or bone marrow donation. 


Visit their website website to learn more about them and the heroic athletes and families that are there this summer: http://www.transplantgamesofamerica.org 

Stay tuned in days to come as I try to get some of the athletes to stop by the blog for an interview.

If you participated in the Transplant Games, contact me on my Facebook Page http://www.facebook.com/AngelDonorBook ! 

                          HAPPY TRANSPLANT GAMES!