In Memory of Tucker Cross Hinson

As parents, we all have dreams for our children. While we may have various ideas for how they realize those dreams, the culmination of them is all the same. We dream for safety, love, happiness, health, success, and most of all, we dream for them to be saved by Jesus. What is special about this situation is that the culmination of the Hinson's dreams has already been realized. Tucker is safe in God’s arms, loved beyond measure in Heaven and on earth, filled with a happiness we can only dream of, completely healed, and successful in the fact that he is fully mature in Christ. He got instant Heaven. There is a vision of Tucker surrounded in brightness, smiling as he holds Jesus’ hand, and looking down at his family as he says, “I can’t wait for them to get here and see me now.”

Tucker Cross Hinson was born on July 1, 2012 at Blair E. Batson Children's Hospital in Jackson, Mississippi. He was diagnosed before birth with a rare chromosomal abnormality called Pallister-Killian Syndrome. Tucker also had a diaphragmatic hernia and problems associated with his PKS. Shortly after his miraculous birth, Tucker was placed on the ECMO machine due to his lungs being undeveloped. While on the ECMO machine, Tucker underwent a critical surgery to repair his CDH. While the surgery was successful, Tucker was unable to heal properly and his organs began to shut down. Tucker went to be with God on July 25, 2012 as he was being held in the loving arms of his parents. This blog post is written in honor of Tucker and his amazing presence on this earth. 

Even in the womb, Tucker was touching lives with a smile. Here are some unbelievable sonogram and MRI photos of him. 

An entire community of family and friends in Vidalia, LA and Natchez, MS came together to support Tucker and his family throughout his mom's pregnancy and Tucker's life. His parents, Kayce and Brett are an inspiration to many because of their strength and faith in God. Tucker has touched the hearts of others from all over the country, and is a shining example of how every life, no matter how brief, is full of purpose in Christ. 

A replacement blood drive was held for Tucker, and long lines formed outside as tons of people waited to give blood for him. After his passing, a softball tournament was hosted to raise funds for Tucker's Family. Family and friends also lit candles and released balloons and lanterns for Tucker to honor his life and remember him. 

Mississippi College (Daddy's alma mater) hosted an alumni baseball game in honor of Tucker Cross to raise funds for Blair E. Batson Children's Hospital Pediatric Intensive Care Unit. 

The current baseball team visited Children's Hospital to deliver $1000.00 in honor of Tucker. They also spent the day visiting patients. 

Lights were placed on the Blair E. Batson Children's Hospital Christmas Tree this year in honor of Tucker. 

Tucker's picture was featured in the CHERUBS 2013 Congenital Diaphragmatic Hernia Awareness Calendar to help raise awareness of CDH.

                                     

With amazing strength, Brett and Kayce attended the Blair E. Batson Radiothon to share their story with listeners as they encouraged others to donate to the place they called home for many nights. They were reunited with PICU staff who had become like family throughout their stay in the hospital. Tucker's mom and dad had 25 days with him at Batson, and they will forever be thankful for those moments. They were also excited to share the news that they are now expecting another child- Tucker's brother or sister!

You can listen to their radio interviews by using this link: http://www.youtube.com/watch?v=D0va-hwd8ME&list=UUqid6yBDhLr30nBTCDbn6vA&index=3

A note from Tucker's Mom, Kayce...

Well 2012 has been the best and worse year of my life. A year I will never forget. I think it is safe to say I have grown so much in this one year's time. I have had to deal with more than some people will ever deal with in their entire lives. I am not writing this for people to feel sorry for me but for people to learn from this, for people to be drawn closer to our Lord and Savior Jesus Christ,because without Him I am nothing. We were blessed with 25 amazing days with Tucker and that is something I will forever be grateful for. Most people think that they would just absolutely die if this happened to them and I too even thought that before it happened to me. The truth is, if it wasn't for the peace of our Lord I would not have had the strength to endure all of this. He is my strength and He is the One who blessed us with such an amazing child who changed so many people's lives. Yes, there is not a second that goes by that I don't think of Tucker, and long for him to be here with me but he is healthy and happy and so much better off than we are. He is the lucky one that God chose and I am the lucky one he chose to be his mother. Until that day that we meet again I know he is safe in the arms of God and that God will continue to give me the peace and strength to continue on using Tucker's life as His testimony. 

I want to leave y'all with the lyrics to this awesome song that has touched my heart so deeply. 

"Even If" by Kutless

Sometimes all we have to hold on to

Is what we know is true of who You are

So when the heartache hits like a hurricane 

That could never change who You are

And we trust in who You are

Even if the healing doesn't come

And life falls apart 

And dreams are still undone

You are God You are good

Forever faithful One

Even if the healing 

Even if the healing doesn't come

Lord we know Your ways are not our ways

So we set our faith in who You are

Even though You reign high above us 

You tenderly love us 

We know Your heart 

And we rest in who You are

You're still the Great and Mighty One

We trust You always

You're working all things for our good

Well sing Your praise

You are God and we will bless You

As the Good and Faithful One

You are God and we will bless You

Even if the healing doesn't come 

Even if the healing doesn't come 

Helen Keller once said, “"What we have once enjoyed and deeply loved we can never lose, for all that we love deeply becomes a part of us." Tucker is a part of his parents and has touched countless people who will be forever impacted by his precious life. They are also touched by the Hinson's testimony of faith, strength, and diligence as they fought for their amazing little boy. They never gave up, and their story will never be forgotten. 

Psalm 34:18 The Lord is close to the brokenhearted 
    and saves those who are crushed in spirit.

~Megan B.

Tucker had Pallister-Killian Syndrome....

Pallister-Killian Syndrome or PKS is a rare disorder which occurs for no known reason.  It involves a double duplication of the short arm of chromosome 12.  It is also a mosaicism.  This means that only a certain number of cells are affected by the extra parts of the chromosome.  Some cells are normal.

PKS is currently known to affect less than 200-300 children in the world.  Some doctors believe the rate of incidence should be as high as 2,000 cases in the U.S. alone.   

 

So, why aren’t there more cases…?

We believe there are cases out there that need more testing to ensure an accurate diagnosis!

Testing is done via skin biopsy, blood work or a buccal smear (cells removed from the inside of one’s cheek).  If nothing shows in the blood, often doctors will leave it at that. 

However, often, affected cells leave the bloodstream after just a few days leaving no trace of anything wrong.  If the child appears to have a disorder, always follow up with a skin biopsy or a less-invasive buccal smear.

Right now, many doctors don’t know much about PKS.  The information in medical documents and the internet is very outdated.  Doctors tell families what they know but that information may no longer be accurate.

PKS Kids is trying to change that through educational materials and opportunities.

One thing is certain; all these children are unique.

*Information taken from: http://www.pkskids.net/medicalresearchinfo.php

along with Congenital Diaphragmatic Hernia...

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing 

abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of 

every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 

50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half 

million babies have been born with CDH since 2000. 



                                     


CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and

 even less research. 1600 babies are born with CDH every year in the United States. 

Globally, a baby is born with CDH every 10 minutes.

CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, 

while we continue to support families affected by this devastating birth defect.

Information taken from:

 http://www.savethecherubs.org/

Williams Syndrome Awareness

"Unless someone like you cares a whole awful lot, nothing is going to get better. It's not."
~ Dr. Seuss

May is for Williams Syndrome Awareness.



What is Williams Syndrome?

Williams syndrome is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing. Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

Please know the facts and spread awareness of this little known syndrome.


Please visit http://www.williams-syndrome.org/ for more information.

Christopher has Barth Syndrome

What an adorable little guy, right? When you look at this picture of Christopher, you would never know that he is different from any other little boy his age. You would never know what a miracle it is that he is with us today. Christopher has Barth Syndrome. Barth syndrome is a serious X-linked genetic disorder, primarily affecting males. It is caused by a mutation in the tafazzin gene, resulting in an inborn error of lipid metabolism. Barth syndrome is an X-linked recessive genetic condition, generally transferred from mother to son. A mother who is a carrier of BTHS shows no signs or symptoms of the disorder herself.
There is a 50% chance that a boy born to a female carrier will have BTHS, while girls born to a carrier have a 50% risk of being carriers themselves. All daughters of a male with BTHS will be carriers; however, none of his sons will be affected. There are several known non-carrier mothers, and for this reason experts believe mothers should be tested.
Barth Syndrome kids are affected by various, serious medical difficulties such as the following: Cardiomyopathy, Neutropenia, Muscle Weakness, Growth Delay, Cardiolipin Deficiency, and 3-Methylglutaconic Aciduria, Type II (MGA, Type II)


Please read Christopher's amazing and inspiring story about his (and his family's) Cross Healed Heart! You can find it on the sidebar. For more information, please visit the barthsyndrome.org or contact Christopher's mother, Kristi Pena. Kristi is an amazing person who is not only a wonderful mother, but a servant of Christ who goes above and beyond to support other families while spreading awareness of both CHD and Barth Syndrome. Help spread the word about Barth Syndrome today. God Bless!

Barth Syndrome Awareness!!

Month of May (MoM) Barth Syndrome Awareness Campaign

"The cruelest irony about Barth syndrome is how deceptively healthy those who have it may appear. A casual observer would never appreciate them to have such a devastating illness." ~ Peter G. Barth, MD, PhD: 1996


The month of May has been set aside to promote awareness and increase knowledge of Barth syndrome. We would like to put a face to this syndrome. We want people to realize there is more to a boy or man affected with Barth syndrome than just a diagnosis. These are people with stories to share, enlighten and even inspire. The best way to do this is by telling the world about our boys/men as well as our families.
~from www.barthsyndrome.org

Most of us realize how much just being aware can make a life-saving difference for children born with various medical difficulties. Help spread the word about Barth Syndrome today! Please read the following quotes and stories, and check out www.barthsyndrome.org today!!



In Loving Memory of Ben Thorpe
September 2, 1994 - November 17, 2010

When a Barth sufferer gets sick, it doesn´t only affect him but affects everyone around him too, from family to friends. By finding a cure you will not only be helping the sufferer but also his family and friends. When a Barth sufferer passes away, it is not only traumatizing for his family but also for all his friends who also suffer with Barth syndrome and their family members in the Barth syndrome community.
~ Ben Thorpe, South Africa




"...We contacted BSF immediately after receiving the results. If we could help in any way with the research to find a treatment or a cure we wanted to get started straight away. One boy could have all of the answers, and maybe that one boy was Henry."
~ Tiffini Allen-Dollard, Mother of Diagnosed Son, Indianapolis, IN A

Personal Message from the Dollard Family...
Henry Michael was born on June 30, 2008, just in time to watch his first Chicago Cubs game.Unfortunately, Henry missed the game. His sugar levels were low, warranting a night in the care unit where his nurses could keep a closer eye on him. Fortunately, the stay in the care unit led to an early diagnosis of dilated cardiomyopathy. Henry was three days old when an echocardiogram revealed that his heart was severely dilated and his ejection fraction was merely 10-15%. That day he was whisked off to the NICU, and after only nine days, his ejection fraction was at 25-30. He was doing so great that his team of doctors released him to go home to sleep in his cozy crib.After a couple of months out of the hospital, Henry’s cardiologist suggested we seek a second opinion.
After a review of Henry’s echos, he was diagnosed with left ventricular noncompaction of the heart, and it was suggested that a muscle biopsy be performed to rule out a mitochondrial disorder, just in case Henry would need to be placed on the transplant waiting list. That was shocking to hear, and we needed to educate ourselves. After a little on-line research, we suspected Henry had Barth syndrome (BTHS). We mentioned this to one of Henry’s former doctors who dismissed the idea. While we lack medical degrees and have the utmost respect for all those who have cared for Henry, we wish that particular doctor hadn’t been so dismissive, and, in hindsight, we should have insisted on a genetic test.
Barth syndrome is such a rare disorder, and we just couldn’t believe Henry could have it. Although we also had that moment of thinking someone has to have it, so why not Henry? Henry was four months old when his muscle biopsy came back positive for abnormal mitochondria, which made BTHS even more realistic. He had many of the symptoms: left ventricular noncompaction, abnormal mitochondria, and he was below the 3rd percentile in height and weight.







We lost a son in 2003. It wasn´t until after his death when we learned he had Barth syndrome. During the timeframe of uncovering the cause of our son´s death I learned I was pregnant. Through prenatal testing the child I was carrying was determined to be a boy who had Barth syndrome. That information made it possible for us to closely monitor his heart function throughout the pregnancy and to assemble a team of well-prepared specialists in advance of his birth. This contributed immeasurably to our son´s care and progress during the first few months of his life."
~ Keli Holly, Mother of Diagnosed Son, Texas

Personal Message from the Holly Family...
Keli and I always wanted a big family. We were high school sweet-hearts and, even then, spoke of wanting at least six children! That desire has never wavered. As child bearing began, the Lord blessed us with twins and we never looked back. During a period of eight years, we received into our family six healthy children. Having babies
seemed to go like clockwork. We never dreamed of a difficulty.
That naivety all changed with baby number seven. At birth, Caleb presented with a number of difficulties and was flown to Texas Children´s Hospital in Houston. He spent two weeks there, but came home without a diagnosis. The doctors could only say that he seemed to be “better”. Though he had a variety of symptoms during his short life, no one was able to diagnose the root cause. His medical care always involved a lot of head scratching on the part of the doctors. At about fourteenmonths of age, it was discovered that Caleb´s heart had enlarged to the point of no return. He was immediately flown to Lubbock, where he struggled for three days before going to be with the Lord. It was,to this point, the most difficult day of our lives.


"I have worked with a variety of foundations organized by families and focused on specific diseases over the years and have been pleased and amazed to see how strong an impact these organizations have on its "members". BSF is amongst the strongest, best well organized and thoughtful organizations that I have had the pleasure of working with and wanted to take this time to say "hats off" to all you have done and are doing."
~ Jeffrey Towbin, MD, Professor and Chief, Pediatric Cardiology, Cincinnati Children's Hospital Medical Center; Cincinnati, Ohio

Information provided by:
Barth Syndrome Foundation, Inc.
P.O. Box 618, Larchmont, NY 10538, USA
Telephone: 850-223-1128 / Facsimile: 850-223-3911 / Email: bsfinfo@barthsyndrome.org / Web: www.barthsyndrome.org

Barth Syndrome

The following information was taken from http://www.ninds.nih.gov/disorders/barth/barth.htm

What is Barth Syndrome?
Barth syndrome (BTHS) is a rare, genetic disorder of lipid metabolism that primarily affects males. It is caused by a mutation in the tafazzin gene (TAZ, also called G4.5) which leads to decreased production of an enzyme required to produce cardiolipin. Cardiolipin is an essential lipid that is important in energy metabolism. BTHS, which affects multiple body systems, is considered serious. Its main characteristics often include combinations in varying degrees of cardiomyopathy (a disorder of the heart muscle leading to a poorly functioning heart), neutropenia (a reduction in the number of white blood cells which may lead to an increased risk for bacterial infections), hypotonia (reduced muscle tone), muscle weakness, undeveloped skeletal muscles, delayed growth, lack of stamina, varying degrees of physical disability, and methylglutaconic aciduria (an increase in an organic acid that results in abnormal mitochondria function). Although some with BTHS may have all of these characteristics, others may have only one or two, and, thus, are often misdiagnosed. BTHS is an X-linked genetic condition passed from mother to son through the X chromosome. A mother who is a carrier of BTHS shows no signs or symptoms of the disorder herself. On average, 50 percent of children born to a carrier mother will inherit the defective gene, but only boys will develop symptoms. All daughters born to an affected male will be carriers.

Is there any treatment?

There is no specific treatment for Barth syndrome. Bacterial infections caused by neutropenia can be effectively treated with antibiotics. The drug granulocyte colony stimulating factor, or GCSF, can stimulate white cell production by the bone marrow and help combat infection. Medicines may be prescribed to control heart problems. The dietary supplement carnitine has aided some children with Barth syndrome but in others it has caused increasing muscle weakness and even precipitated heart failure. Only careful dietary monitoring directed by a physician or nutritionist familiar with the disorder can ensure proper caloric and nutritional intake.

What is the prognosis?

Early and accurate diagnosis is key to prolonged survival for boys born with Barth syndrome. Severe infections and cardiac failure are common causes of death in affected children.

What research is being done?

The NINDS supports research on genetic disorders such as Barth syndrome, including basic research on mitochondrial dysfunction and investigations of other inborn errors of metabolism. The 1996 discovery of the Barth gene is helping scientists and physicians better understand the metabolic and biochemical abnormalities seen in the disease and learn how genes cause heart disease, muscle weakness, and other problems in the body. The ultimate goal of this research is to find ways to prevent, treat, and cure these disorders.



To support Barth Syndrome awareness by purchasing this beautiful necklace, please visit the following link on etsy.com
http://www.etsy.com/listing/54285614/barth-syndrome-necklace

To donate or find out more information, please visit...
http://www.barthsyndrome.org/english/view.asp?x=1