a little rae of hope »

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Grayson was born with a host of complications- He has hydrocephalus which he has had 2 surgeries to try to control but we are still working on it. That means he has pockets in his brain that have more fluid than the average person which causes a large head and can put too much pressure on his brain and can be life threatening. He was also diagnosed with a rare hearing disorder called auditory neuropathy which causes his ears to create a static noise. He could need cochlear implants to help make things clear. Also may have significant speech problems, as things aren’t clear to him. He has always tested on the severe end of the scale. I feel this diagnosis can be just as life changing as the spina bifida! Because of the opening on his spine it caused something called a chiari malformation where basically the back of his brain has fallen back into his spinal column and causes a host of problems. For example chocking, gagging, and eating problems! I also think it caused him to have something called nystagmus where his eyes shift back and forth all the time and any change in direction sends his eyes spinning all over the place. He also has trouble with his arm use as they are stiff and has trouble opening his hands. His PT says he is severely hypotonic which means he is basically still very floppy and his core is extremely weak. He also has to be catheterized four times a day as he is unable to empty his bladder completely and it has constant spasms that can create kidney damage and overall bladder issues. This is something he will need to address all his life! He has to take laxatives as his bowels don’t function properly. Also has hip dysplasia which means his hip socket isn’t formed properly and causes one leg to sit shorter and pop in and out constantly. He had a spinal closure when he was 18 hours old and has had three  brain surgeries to help the hydrocephalus and on watch right now for another. I have lost track of the MRI scans he has had among so many other tests and procedures! But through it all he is THE HAPPIEST, SWEETEST, CUDDLIEST, AMAZING BABY EVER! Words can not describe the joy he brings to everyone around him! He lights up a room NO DOUBT!

A huge thank you to KTobin Video for these priceless images.

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Sebastian and I moved to Katy, Texas to begin our new journey as a married couple. We started our new life working and just enjoying being young and married. Our journey took a huge turn with those awful and shocking words, “You have Cancer.” Sebastian was diagnosed with Stage 3 Testicle Cancer.

At twenty-two years old and newly married, our move to Katy was turned upside down. Cancer is horrible, we all know that, it there is a silver lining, Sebastian dealt with four months of chemotherapy, hair loss, and just being weak and tired. Then the big seven hour surgery where twenty-eight lymph nodes were removed from the stomach and neck.

Sebastian, the night of surgery, took our breaths away. The doctors told us that they wanted him to walk right away and when Sebastian stood up on his own, after tow attempts, we knew he had conquered the cancer and beat it. Three days later he was discharged, to our surprise, we thought he would need to stay a week in the hospital.

This experience has taught us to live one day at a time. We are blessed for each day we get together. We also want to thank all of our families, friends, and the support team we had. We also want to thank MD Anderson for all the amazing care you are still giving to Sebastian until we can say that his cancer is LONG GONE!

Live, Laugh, Love, and Believe in Hope, God is amazing!

Thank you to JH Creations for these images.
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Caroline Grace entered this world on May 11, 2015 weighing 6lbs and 1oz. We heard her soft cry, saw her pink skin… but most of all she was breathing.
We didn’t know how much time, if any, we would have with our daughter.
At 23 weeks gestation, we discovered that Caroline had Trisomy 18, a chromosomal abnormality that resulted from her having three copies of chromosome 18.
Trisomy 18 occurs in about 1 in 7,000 live births. However, it is more common in pregnancy but due to the serious physical defects associated with the condition, many babies don’t survive. About half the babies who are carried full-term are stillborn. Of those that do survive, less than 10% live to reach their first birthday.
Caroline is 3 months old. We celebrate her birthday every month.
She is a fighter. She is OUR miracle.
When we received her diagnosis, we vowed that we would always follow Caroline’s lead. God not only chose us to be her parents, but he chose her for us. His plan was intentional.
Caroline has several anomalies ranging from loss of hearing, facial paralysis, microphthalmia, clenched fists, weak muscle tone, rocker bottom feet and severe heart defects. She cannot eat orally and has to be fed via an ng tube.
Due to her severe cardiac issues, she may need surgery in the future.
We will follow her lead.
She is gaining weight, slowly opening her hands, attempting to hold her head up, and learning to use a bottle. All of these milestones are often taken for granted with a new baby. In our household, we celebrate the small things.
Caroline may never eat orally, walk or speak. But, then again, maybe she will.
No two children diagnosed with Trisomy 18 are alike.
Medical professionals, and society, have noted that these children are “incompatible with life”. Caroline has a brother and sister who adore her. Parents who chose to give her life. She is loved beyond belief. Every day we get to spend with her is a gift. Although, we don’t know how long her journey will be here on earth, we do know that she is very much compatible with life.
Follow Caroline’s Journey on facebook or on caringbridge.
Thank you to Jamie Oldenburg Photography for your time and talent.

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Larry’s cancer journey began in 2008 when his annual checkup revealed unsettling news. After doing a PSA check on him they sent him for a biopsy. With that biopsy he was diagnosed with prostate cancer. Because his prostate cancer was slow growing they said there was no rush to get things done, which gave Larry and his wife Bonnie time to decide the best treatment. Larry took the summer to spend time with his wife, kids and grandchildren. His Surgery was scheduled for Oct. 8th 2009. Unfortunately, Bonnie got pneumonia and had to have lung surgery also on Oct 8th. Larry said to the doctors “we can only get well when we are together,” he postponed his surgery. Three weeks later Larry’s prostate was removed, they were able to remove all the cancer. He did not need any chemo or radiation, his recovery went well.

Nine months later, in July of 2010, Larry started to not feel well. After some testing he was told he had an inoperable brain tumor that was called CNS non-Hodgkin lymphoma. He then went through a year of chemo therapy. Despite losing his appetite, his hair and several other struggles Larry kept a positive attitude and never lost his sense of humor. Larry was placed in remission and never missed a follow up appointment for the next four and a half years. With every visit came the same good news, he was cancer free.

​In March of 2015 Larry and his wife Bonnie took a vacation to Florida where Larry picked up a virus that he never recovered from. He started losing weight and that’s when the doctor appointments started. He started with his cancer doctor, she assured him that he was still cancer free and sent him to his family doctor. His family doctor started ordering and running tests which were coming back negative but Larry’s health was still declining. On May 10th 2015, Mother’s day, he fell at his home and was taken by ambulance to the hospital. He was admitted and many tests were ran with the same inconclusive results. After several weeks he was diagnosed with chemo brain and was sent home to do physical, occupational, and speech therapy. He was home a week and a half before being readmitted back into the hospital. After more extensive testing they found that his lymphoma was back but this time it was in his spinal fluid. They started chemo right away, but after a few treatments saw that this time it was not working.

​Larry’s wife and children brought him home on hospice on July 11th 2015 to make him as comfortable as possible. Through his entire journey he was never left alone for a single minute. The time he spent at home he shared his love and his good byes with friends and family. Sadly, Larry lost his battle with cancer on the night of July 24th 2015 with his wife and children standing by his side.

Larry was more than a cancer fighter; he was a wonderful husband for the past 42 years, a loving Father to his 6 children, a caring Grandfather (Pop) to his 16 grandchildren and a good friend to many. He put his family above all else and was an extremely hard worker and a wonderful provider. He loved his family with everything he had; there wasn’t a selfish bone in his body. Everyone who knew him loved him; he was kind, generous and had the best sense of humor. Larry is missed everyday by so many. Heaven is even more beautiful now that he is there.

“I have fought the good fight, I have finished the race, I have kept the faith.” Timothy 4:7

Thank you, Sara Adkins for donating your time and talent.

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It’s been his motto since the day they found out. The competitive 11 year old that he is.
Parker – 1
Cancer – 0

In August 2014 Parker was diagnosed with stage 4 neuroblastoma. He fought hard for the last 11 months. The images shared below are actually from two different sessions, the first in August immediately after he was diagnosed. The second, when he entered remission.

I could share all of the trials they have been through but instead, I want to share a heartfelt, honest, tear jerking, yet inspirational post from his dad:

His hair has grown back, he is gaining weight, his smile comes more, and I even hear him laugh. In 7 hours, the doctors are going to remove the last real bit of evidence that my son has cancer, his central line.
I cant forget that he has cancer. I will never forget that he has cancer. Parker will never live a day without being reminded of this nightmare. For a day, for one single day, we will get to celebrate a victory.
For the first time in almost 365 days, he will take a shower, roll over on his stomach while sleeping, hug without fear of getting hooked on a piece of clothing, even let himself be touched without flinching.
Later today, my son will have the last physical reminder of his disease removed from his body. My prayer is that for a few hours afterwards he is able to celebrate something. My prayer is that he feels confident again. My prayer is that he feels 11.
I just wanted to update everyone on the great news in Parker’s life because each of you were there almost 1 year ago when my world crashed. Each one of you were there to do your best to pick me up. Each one of you showed me love I didnt deserve. For that, I am forever grateful.
I hope that sometime, sooner than later, my son gets to meet all of you in person and I can introduce him to all the people I love and who love him.
Thank you all. My son is a fighter, my son is a gift and my son is healing.

Congratulations, Parker. Celebrate big tonight!2015-07-25_0008.jpg
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The story of Riley and her special heart began before she was even born. Here is the story from the beginning along with a brief update by her mom:

We found out that our baby was a girl at 18 weeks due to a quick unscheduled ultrasound. So when it came time for our 20 week anatomy scan we were excited to see our girl on screen but thoughts that we’d find out something big that day were not there. We were told that our baby girl, Riley Marie, has a congenital heart defect known as hypoplastic left heart syndrome. We met with a high risk ob/gyn that day and they confirmed. Devastated cannot even begin to describe what we were feeling…

A week later, yesterday, we met with a pediatric cardiologist who performed an extensive ultrasound and Echo on our baby’s heart. She was so wiggly during it that the Dr. had the hardest time looking at her heart! She is growing perfectly otherwise and continues to be right on track with growth. They again confirmed the diagnosis and drew us a picture to try to explain what it all meant. To explain it in a very simplified way Riley’s left side of her heart is extremely small and underdeveloped to the point where it will never be functional. There is no way to change that but instead she will have 3 surgeries to help the right side of her heart function for the left side. We are definitely still learning and trying to understand all of this. We have decided that I will deliver at St. Vincent’s hospital and she will have her surgeries at Peyton Manning’s Children’s hospital. She will be in the NICU after she is born until her first surgery which is usually within 5-14 days after birth. We learned that there is nothing that caused her to have this and that nothing we did or didn’t do caused it. We are truly blessed to live in this time where there has been so many advances with the surgeries as all of this technology around hypoplastic left heart syndrome is only 30 years old and before that the survival rate for these babies was not existent.

Riley was born on March 9th and had an atrial septostimy right after birth. She had her Norwood which was considered a high risk Norwood on March 19th. She came back from surgery on ECMO and was on for 4 days. They took her off of ECMO due to severe bleeding. She was not ready to come off ECMO and struggled to keep her sats up for the next week. That week was filled with many events where they would push epi and fluid to bring her bp and sats back up. On April 1st she was unable to keep her o2 sats up even with meds to the max and vent setting to the max so she went on ECMO for the 2nd time, this time neck cannulated. She was on ECMO for 16 days. During her ECMO run she had a heart cath which was a high risk cath with her on ECMO. They did not find anything that they were able to fix during that like they had hoped. The night that she came off of ECMO they did a head ultrasound and found that had had a brain bleed. After hooking her up to the EEG they found she was having seizures. She started a seizure med that stopped all seizure activity. The brain bleed had stopped but they decided to put a resevior in to be able to “tap” into with a needle to take excess fluid off of her brain. She continued to need the resevoir tapped often so they eventually put a permanent shunt in to drain the excess fluid into her belly. An MRI showed that Riley has brain damage in the areas of vision and gross motor skills. As of right now she is moving all of her limbs and focusing her eyes. The Neurologist is very impressed by her and said that it shows that you never know with a baby what their brain is capable of. Riley is currently in the step down unit and we are starting parent care to go home soon. She will have her 2nd surgery later this year. Riley Marie is nothing short of a miracle. We are so grateful for the drs and nurses who have taken such good care of our girl. They never gave up on her!

To follow Riley’s journey go to:
Riley Marie’s Heart on Facebook or their YouCaring page

A special thank you to Lori Maragson Photography for the beautiful images she provided for this family.

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Hope Prevails


We are so eager to announce our new campaign.

The month of September we will feature one family a day for thirty days. While a little rae of hope was born the day a mother made a single plea to have photos taken of her terminally ill child, it wasn’t until September 2014 that a little rae of hope became a growing organization available for families across the United States. In September 2015 we will celebrate our first anniversary of bringing smiles to families who are desperately clinging to the only thing they have… hope. In efforts to spread awareness about our organization so we can reach more families, we bring you Hope Prevails

We are looking for 30 photographers across the United States to help us find and feature 30 sessions of Hope. If you are a photographer interested in applying to be chosen for our campaign, please click apply now for more information. 

Apply Now

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Emma’s Story is told by her loving sister:

“In 2003 my family was blessed with a beautiful baby girl weighing in at a healthy 7lb 9oz and 20in long. We were all so excited and also unknowing of the future ahead. Emma Grace Hemslein Hess was born on September 17, 2003. She was the most precious blonde haired, blue eyed baby we had ever laid eyes on. We could not wait to get her home and do what every mother and sister dream of… dressing her up! My dad and brother were so proud to have a new daughter and sister! Two days later she was sent to WVU Children’s Hospital in Morgantown, WV where she was diagnosed with Hypoplastic Left Heart Syndrome or HLHS for short. Our beautiful baby girl had been born with a Congenital Heart Defect. About 7 days later she had her first of 3 major open heart surgeries, the Norwood. She came home for the first time ever on November 10, 2003.
March 16, 2004 Em went back to WVU Children’s Hospital where she had her second open heart surgery, the Bi-Directional Glenn Procedure. In May 2004 she was flown to Nationwide Children’s Hospital in Columbus, OH for a stint to be placed in her pulmonary artery. After a week she was flown back to Morgantown for G-Tube placement surgery then came home July 1, 2004.
Three years after being home she went back to Morgantown on July 19, 2007. She underwent three open heart surgeries. The first was the third of her major heart surgeries, the Fontan Procedure. She then had her first fenestration that same month and her second in July. She came home August 8, 2007 and was hospital free for 7 years!
These past 7 years are when Emma truly captured the hearts of everyone who encountered her! She became well enough to attend public school for the first time, which she loved so much!! Just seeing her will bring you joy! Over the years Emma has taught my whole family and everyone who meets her so very much! Emma loves unconditionally and lives everyday with love and light. Even on bad days she never fails to smile through her pain and discomfort. Emma is an angel sent to us to teach us all what it really means to live every single day to its fullest. To love like you never thought you could love before and to fight to be the best you can be. To truly know what it means to live, love and laugh. I know I would not be the daughter, wife and mother I have become without Emma and she continues to teach me to be better everyday.
Christmas Eve 2014 was the first time Emma passed out and quit breathing. That was the first of many more to come. We spent the next month worrying and trying to figure out what was causing this and how to help her. January 15, 2015 Emma was admitted once again to WVU Children’s Hospital for respiratory distress. That is when she was diagnosed with PLE- Protein Losing Enteropathy, a condition of the gastrointestinal tract which results in a loss of protein from the body. About 13.4% of patients who had the Fontan Procedure develop PLE. Our Emma is one of them. As a result of this Em had a pacemaker put in, octreotide treatment (which failed), my mom gives her a daily Heparin Subcu shot in her belly and she has a feeding tube with Portagen and Beneprotein added (this is a continuous feed). She also had a Tenk Drain Tube placed in her belly to pull fluid off her stomach and is on 14 different medications given up to three times daily, and has home healthcare.
Emma came home on March 9, 2015. That was when the doctors gave us the dreaded news of her survival rate to be hopefully through summer 2015. We hope and pray that God grants us yet another miracle for Emma but we are so blessed to have had her at home for those 7 hospital free years! Since being home she has good and bad days but continues to show her beautiful smile. She is a fighter for sure!
I am so thankful not only for Emma but for my parents who always put 100% into being amazing parents and caregivers not only to Emma but to my brother, myself and their grandchildren! God not only gave us an angel in Emma but parents who unselfishly devoted their lives to their family!”

A special thank you to Lori Pickens Photography for these priceless images. Hess Family, you are in our prayers.
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