Glo gets a VIP Shopping Spree!

Meet our friend Gloria, who was recently treated to a VIP shopping spree at the Justice store in the Rivertown Crossings Mall.

Gloria was born with VACTERL Association which is a syndrome that can affect all areas of the body. Each letter in VACTERL stands for a different area of the body it can affect. Most people with VACTERL have only 3 of the letters to be determined to have this but Glo has all 7.

The V represents Vertebrae. Glo’s spine is not fully formed and she has severe scoliosis. This interruption of her spine has effected the nerves that control bowel and bladder causing incontinance.

The A stands for anus. Glo was born without one. Thankfully after several attempts to create one she has one. 😊

C is for cardio. Glo had a hole in her heart that was patched when she was 13 months old. She also deals with ongoing arrhythmia issues.

The TE stand for tracheal esophageal fistula. Glo’s trachea and esophagus were connected when she was born. Had we fed her everything would have gone in her lungs. When she was less than a day old surgeons fixed this connection and stretched Glo’s esophagus to attach it to her stomach. They also gave her a colostomy at the same time.

R stands for renal- Glo only has one functioning kidney that is very prone to infections.

L is for limb differences. Glo had surgery on both hips for Dysplasia and had two fingers on each hand fused.

In total Glo’s had over 60 trips to the OR and is followed by 16 different specialties. Right now here biggest hurdles are her kidney issues, esophagus issues, and severe chronic lung issues.

Thanks to the support of our donors, Glo was able to have a fun trip to Justice!

Gloria and her brothers
Gloria with Libby Neifert (left) and Ella Neifert (right)

A Bounce House for Elizabeth!

Meet Elizabeth as told by her mom, Jennifer:

Elizabeth is quite possibly the silliest, most fun-loving 6 year old you’ll ever meet. She loves My Little Ponies, Little Mermaid, playing with her little sister, Anna, and laughing whenever possible.

On April 28, 2013 we took Elizabeth to the emergency room for a lingering fever, loss of appetite and mild shoulder pain. She didn’t appear sick but we figured we should probably have her looked at. That evening, just a few short hours after her tap dance recital we rushed from our local hospital to Mott Children’s Hospital in Ann Arbor. The following day, after an invasive biopsy, Elizabeth was diagnosed with Stage IV Wilms Tumor. This rare form of childhood cancer begins with a tumor on the kidney. Elizabeth’s tumor was the size of a small soccer ball. The cancer had also spread to her lungs, liver, and was growing inside her Inferior Vena Cava. Elizabeth underwent 13 consecutive weeks of chemotherapy before having a 9 hour surgery to remove the tumor. The surgery was very successful! After two weeks of recovery from this very extensive surgery Elizabeth endured 12 straight days of radiation to her chest, abdomen and pelvis. She is currently 1 round of chemotherapy away from completing a 33 week treatment protocol!

Elizabeth’s small body has been through so much. However, her happy, fun-loving spirit has never ceased to amaze us. One of Elizabeth’s most consistent requests during her treatment was to go to a bounce house. With her immune system being constantly compromised from the chemotherapy and radiation, we were unable to take her to public bounce houses. On a warm July afternoon, after a particularly challenging round of chemotherapy, we were able to surprise Elizabeth with a bounce house of her very own!! The look on Elizabeth’s face the moment she saw the bounce house was one we will never forget. This summer Elizabeth and her sister, Anna spent countless hours bouncing to their hearts content. They were “hit” of the neighborhood! We are forever grateful to the Neifert Family and Healing with Hope and Happiness for putting a special “bounce” in Elizabeth’s heart during an extremely challenging time.

An iPad for Enrique!

On Thanksgiving day 2013, Enrique began having stomach pains off and on with fevers that came and went throughout the day. The pains continued over the holiday weekend and we took him to our family doctor on Monday morning. The doctor thought he was suffering from constipation but was suspicious about the fever that kept coming and going. By Tuesday evening, Enrique had lost all appetite and only wanted to sleep. We took him to the ER and were shocked to find out that he had leukemia. He was rushed over to Helen Devos Children’s Hospital to have immediate blood transfusion and chemo started. It was here that we found out he had “type T, ALL leukemia”, the most common and most curable form of leukemia. His white blood count was out of control, and we were scared that he would start to have organ failure/complications.

Fortunately he was being taken care of by the best doctors in our area. They were able to get everything under control and a few hours after arriving (but it felt like an eternity to my husband and me) we were already getting news of how well he was responding to the treatments. Only one week later he was allowed to go home. He looked so much better than he had just a few days ago.

It is one month later and Enrique continues to show great results to his treatments, in fact we just recently received the wonderful news that he is now in remission. We have a 3 year journey ahead of us before he can be considered cancer free and cured, but we enjoy everything with a whole new perspective now. All the little things in life that we had taken for granted a month ago bring so much joy to us now.

HHH Update: We were lucky enough to meet with Enrique in December and give him a new iPad mini, thanks to the generosity of HHH donors. And, most importantly, we are happy to report that Enrique is responding well to treatments!

Enrique is enjoying the ipad mini he received from HHH! He especially enjoys facetiming with his friends and cousins when his immune system is too weak due to chemo to see them in person. Enrique also likes to play games, watch movies and even get some school work done on his ipad mini, which is protected stylishly inside a blue Angry Birds case!

Also, below is one of Enrique’s school writing assignments where he had to write about a time when he was surprised. His mother said that he knew right away that he was going to write about the iPad mini he got from HHH!

Meet Our Friend Rian!

Meet Rian as told by his mom, Allison:
Rian was born at 23 weeks. My water had broken around 16 weeks. He was born on 12/12/12, we were told he probably wouldn’t live through the night. But much to our surprise, he made it! After 372 days in the Helen Devos NICU, we were finally able to bring him home on 12/19/13! We were able to spend a beautiful Christmas with him. After spending 20 amazing days with him at home, he went home to Heaven. His dad & I miss him very much but nothing will ever steal his memories from us, not even death. We love him more than words could ever express!

Added by HHH-

When we were contacted by the Child Life Specialist of the NICU to see if a birthday party fell within the scope of our mission, we were so pleased to be able to help a baby in this department in part because our own Ella had spent her early days in the NICU too.

It was a startling realization, however, when we thought about what it meant that a baby in the NICU was celebrating his first birthday… still in the NICU.

The Child Life Specialist passed on a few photos and ideas for a Very Hungry Caterpillar themed party. Rian’s mother had humbly asked for some cute paper plates and decorations and we knew that she and the other party guests were going to be in for a surprise when they walked into the conference room doctors had okayed for Rian to visit for a short time for the celebration.

Thanks to your support, the conference room was transformed into a party befitting the monumental occasion! There were decorations on the walls an
d ceiling, a personalized banner, gourmet cake, cupcakes and an individual cake for the guest of honor!

Guests (including hospital staff!) were invited to sign an autograph-able plush caterpillar and enjoy as many slices of gourmet pizza they could eat, all while sitting in the company of a 4 foot long plush hungry caterpillar.

What an honor to be a part of such a special celebration. We were so saddened to hear of Rian’s passing and once again touched by the grace of Rian’s mother who asked that he still be featured as one of our Kids of the Year. Rian and his family have touched our hearts and we will never forget this sweet one year old that so clearly brought joy to those that got to know him.

Power Wheels for Carter!

Meet Carter as told by his mom, Kellie:

Carter Rosenberg is your average 5 year old little boy. He loves Angry Birds and Despicable Me and he says his favorite thing to do is play Angry birds Star Wars with big brother Ethan on the Wii. Carter leads anything but a typical 5 year old life though. Carter’s days start with a tube feeding of a special Elemental formula through his Gastrostomy tube in his stomach. Carter was diagnosed with Eosinophilic Esophagitis at age 2 after many months of searching for a diagnosis to explain why he was not tolerant of food. Eosinophilic Esophagitis (EoE) is an auto-immune disease that causes the body to send white blood cells to the esophagus to attack food proteins as if they are foreign. It causes inflammation and pain in the esophagus as well as nausea and vomiting and choking. Carter’s EoE is severe in that he is only able to safely tolerate 3 foods: rice, banana, and blueberries. Carter receives an EGD scope and biopsies of his esophagus and stomach every 6 weeks to see how food is being tolerated. You can read more about EoE here.

When Carter was given his brand new Gator Power Wheels he was absolutely ecstatic! He couldn’t believe he was going to get to drive around his neighborhood in this cool new toy that would be all his Carter’s favorite thing about the gator is that he can go SUPER FAST!!! The Rosenberg family sends a huge thank you to HHH for giving Carter a carefree experience like riding around really fast in his shiny new toy during a time in his life that is full of scary things he can’t control. Thanks HHH!