Lucia was diagnosed with biphenotypic leukemia on May 16, 2018. She has both types of leukemia cells in her body which is extremely rare. In fact, it is so rare that the original hospital she was admitted to (Hackensack Hospital) did not know how to treat it and had to consult doctors from St. Jude.
When she was originally diagnosed, the doctors could not immediately start her on a treatment plan until they received consultation on how to treat her. It took the hospital 5 days to come to a unanimous decision to treat her on a 2.5 year chemotherapy program. Lucia transferred from being treated at Hackensack Hospital to Jersey Shore hospital to be closer to their family and siblings.
Lucia that CRS sponsored in April!! She had a little bit of a tough time with chemo about a month ago, but is going strong now!!!!
Lucia is currently on her 10th month of chemotherapy and biphenotypic leukemia protocol program. Both parents (Eric and Melissa) have been unable to work for months at a time through this whole process, taking a toll on their finances. Their family is active in the local Brick community and sells signs and gold ribbons each year in honor of Pediatric Cancer Awareness.
As if Lucia being diagnosed at the age of 4 wasn't a big enough tragedy, her mother, Melissa was ALSO diagnosed with a brain tumor at the base of her skull prior to Lucia being diagnosed in April 2016. One month later, Melissa had brain surgery to remove the mass which thankfully was not cancerous and she has made a full recovery. Melissa had a second brain surgery in June 2017, and has had minor setbacks but been healthy since.
Gabriel James Alemany was born at 37 weeks on August 19, 2012 weighed 8.9 ounces. At 20 weeks, he was diagnosed with a Congenital Heart Defect known as Tetrology of Fallot with Pulmonary Atresia (Chances of having this diagnosis are 2 in 10,000). It was determined that he would need a cardiac catheterization at 3 days old, which lead to an 8 hour open heart surgery at 5 days old. It was considered a success, but only the first step of many more to come. Although the surgery was considered a success, the true complications began. Gabriel was diagnosed with MRSA (a potentially lethal staph infection), then he developed a urinary tract infection and needed a spinal tap. In addition to all of this, he had trouble eating so his stay in the NICU lasted over 5 weeks.
Gabriel was finally sent home from the hospital on a Friday, seemingly getting better. On Monday, we found ourselves back in the hospital where the doctors determined he had an aneurysm where his first surgery was an needed an emergency cardiac catheterization followed by another open heart surgery. Again, this surgery was also deemed a success, when the next day it was discovered Gabriel’s left leg did not have a pulse. He was diagnosed with a venous blood clot and put on anticoagulant medication. Later that year, he would be diagnosed with an arterial blood clot, and have two more cardiac catheterizations.
By the age of 2, Gabriel had traveled to Boston and back to New York City, where he underwent his 3rd scheduled open heart surgery. Following the surgery, Gabriel kept running fevers of 103.7 and was in pain. 10 days later we found out a pus pocket formed in his chest cavity which caused it to collapse. All these countless surgeries and additional cardiac catheterizations were just buying us time until the next surgery.
Which bring us to this year. We heard through the "heart community" that doctors in Palo Alto, California were performing full heart reconstructions. After numerous second opinions we left for California and a 13 hour surgery which was a success. However, considering our past experiences we continue to wait for the unexpected complication, but so far, it hasn't occured.
We are thankful, because every step of the way, we have had people praying and supporting us. Our journey is far from over and Gabriel will need tests every 3 months with another cardiac catheterization in one year.
Jack Campoli is 14, and has just entered High School. He is so excited. He is looking forward to more independence like a typical teen. Jack is extremely funny, sweet, loving, and very considerate. He loves having friends come over the house (respite workers). He's a great basketball player and loves his puppy dogs!
Jack has had a rough past with epilepsy, there were and are still times that Jack could very well have seizures/brain activity all day. We had a few summers where we couldn't control the 100's of seizures per day and it was just trial and error with the meds as well as in and out of the the hospital. He has such a high tolorance for pain, so sometimes its hard to judge how much pain hes actually in. He also has Meseal Temporal Sclerosis, Autistism and Dysautonomia. He cannot read but he can write his letters and numbers, and will probably live with us for the rest of his life. He is extremely cognitively impaired, as he is on a kindergarten level in school.
With all this and there is so much more that could be said about his disabilities, but I prefer to speak of his abilities. Mainly the PURE love that he has for everyone, and his ability to remember 1 burnt out light bulb among 1000 others from 5 years ago that still has not been fixed in a hotel. Also remembers special dates that are important to him such as November 12 2014 where he met his cousins and they went swimming and everything they were wearing and what they ate.
I am grateful we have a amazing doctoral team behind this process, and have met people who have given us great support. This time is not easy for us, but we are going to push through.
My name is Bridshae Porter. I am the mother of Nyla Wash. I want to thank the CRS Foundation from the bottom of my heart for the donation given. I am blessed to be apart of an amazing foundation trying to help others in need.
The month of April (2017) has had a roller coaster affect on my daughters life. She's had ongoing high fevers for the past two months, some reaching 107.3 degrees. She's been brought to the doctor, and rushed to the hospital numerous times, with diagnosis of something viral to her having the flu. No matter what information was given, the high fevers always came back. After a certain point Nyla wasn't getting better, so one night I took her to the hospital and I refused to leave without having all questions answered. Doctors did all different types of tests. I stayed in the hospital until finally they had a diagnosis.
The doctors had checked Nyla's blood and discovered her being positive with acute myeloid leukemia; better known as cancer of blood cells. I was in denial and never thought my three year old child child could be diagnosed with this health condition. My daughter has started chemotherapy and we are praying that the cancer does not spread throughout her body, and that this process goes as smoothly as possible.
I am grateful we have a amazing doctoral team behind this process, and have met people who have given us great support. This time is not easy for us, but we are going to push through.
Hi my name is Carrie Rizza. I'm the mother of Hunter Rizza. I first would like to thank you for your generosity!! It is very humbling to have all this support.
On October 30th Hunter fell off the ATV in front of the house. He sustained a TBI. He was put in a sedated coma. Then November 1st he under went the removal of the two sides of his skull to help with swelling and pressure of the brain. I'm the past 5 weeks he has not done what they expected. He has been a challenge. But pulling through great. A week and 1/2 after the first surgery he had to undergo another for he had an infection in the head. So they had to reopen the right side of his head to clean it out.
He is now off the vent and talking some. Has a lot of rehab he has to under go. But now we have a stage 4 to the bone and large bed sore on his tail bone. So we are trying to get this handled so we can get to a rehab center.
Again we are very blessed to be apart of a great community.
Everyone meet Caroline another one of the CRS Foundations latest recipients. Caroline has a rare condition called Mosaic Triploidy only about 25 or so kids have this in United States. It means she has 2 sets of chromosomes in some of her chromosomes. It affects her speech muscles mostly. She is 9 years old and can't crawl or walk and mostly gets around via scooter or her wheelchair. Caroline can understand what everyone says to her and can also read a little. She has a great personality and sense of humor. Her mom Kim and sister Carly are pictured here with her.
This was the greatest Thanksgiving surprise!
Lena has Dravet Syndrome, a rare form of epilepsy, which means the patient has three or more types of seizures. Typically the events occur at varying degrees of severity. Lena started at 8.5 months of age with her first grand mal seizure. She is now 9 yrs old, has limited vocabulary, walks with unsteady gait, and can’t regulate her body temp.
Mom is looking to buy a special stroller so that she can take Lena on lengthy outings like amusement parks. "Thank you so much! It really does mean so much that there are such kind people out there. " - Jennifer Gallo.
Keira was adopted 4 years ago by her biological grandmother and needs a wheelchair. Keira was born with a form of Dwarfism, which is a condition of short stature. She has had 5 surgeries on her legs (hence the wheelchair requirement at this time), she has also had 5 eye surgeries and is partially deaf.
This is Angelina our most recent recipient. Angelina has something called Pyruvate Dehydrogenase Deficiency, it is a rare mitochondrial disorder that has no cure. Her parents Joanna and Joe, were so touched by this amazing act of kindness that we have sent to their family. "Words cannot even begin to express how grateful we are for your very generous donation. Life with Angelina is very difficult and having to worry about funds for medical expenses is such a burden on our family. Thank you so much for helping our family, you really have no idea how much it means to us ❤️ god is good. God bless you all."
Two days shy of 26 weeks gestation, Amy & Daniel Jodoin received devastating news during a routine visit to monitor their twin girls. Upon further testing they found that one of their babies, known to the doctors as baby A, had a significantly enlarged left ventricle. There was no explanation as to the cause making it more difficult to accept the news to follow.
The prognosis for “Baby A” was very grim, the baby would most likely not survive in utero longer than a few days. The team of doctors informed the Jodoins’ that there was nothing they could do at that point. However, “Baby B” appeared to be in perfect health. While grateful for the news of one healthy baby, this posed a new challenge. Exhausted and heartbroken the couple was sent home to wait for their unborn daughter to pass …or to wait for a miracle. Over the course of the weeks and months that followed “Baby A”, named Addilyn Grace, would defy the odds by continuing to grow and develop normally, with the exception of her heart.
By 28 weeks the cardiologist was finally able to get the images needed to diagnose Addilyn with critical aortic stenosis, tri-cuspid regurgitation, mitral valve regurgitation, and pulmonary valve stenosis. The team discussed several options including a number of surgeries or heart transplant, which all came with an “if” factor, and Amy and Daniel were told there was little chance any of the procedures would be successful.
With transplant a viable option, the team decided, at 34 weeks gestation, Addilyn would be placed on the fetal transplant list. At 39 weeks gestation, Addilyn Grace and Ainsley Rae made their appearance at 10:00 and 10:01 AM on May 10th. On day one of life, Addilyn was added to the national transplant list as 1a, urgent status.
Once again Addilyn, the baby that there was nothing that could be done, given a slim chance to live, and going to need unmeasurable amounts of support, defied the odds against her. Addilyn Grace is still in the congenital heart unit at Shands, 48 days old and waiting on the perfect heart.
As the days turn into weeks, Amy and Daniel remain hopeful that they will receive the news that a heart has become available for Addilyn. One thing both Amy and Daniel have struggled with is knowing that for Addilyn to live, other parents will lose a child. They pray continuously for a new heart for their baby and for the donor’s family. Addilyn’s journey has inspired Amy and Daniel to help educate others about organ donation and they encourage you to consider registering as a donor.
Kind greetings to all out there. I need your help and prayers for our little baby girl Nikol Natali. Our doughter was born on 1 of May 2015, healthy and beautiful. It seemed everything went well, yet later on Nikol was diagnosed with Biliary Artesia.
It's a rare condition and only a liver transplant would save her life. When Nikol was 6 weeks old, she under went Kasai surgery procedure, where the small intestine was attached to her liver, so bile can flow and be eliminated from her liver. As of today, we are back to the Hospital again with Cholangitis, after surgery complications and inflammation. Despite being on aggressive therapy there is a little or no improvement. Our last hope is a liver transplant. Nikol is a very strong-willed girl, always with a smile and trying to talk. Each morning the nurses come to do her blood work and she never cries, instead she is just smiling. Nikol is fighting along with us, and does not give up. Please pray and share!!
Nikol has since had her liver transplant and continues to battle toward recovery. We can't wait until it safe for Nikol to go home. Want to say a special thank you to the CRS foundation fortheir generous help and support!!!
In July my 4 year old son Preston started to vomit almost every morning, we had no clue why, so we thought "it’s just an upset stomach". I was 5 months pregnant and cleaning up vomit constantly and worrying. We took him to several places and no one could tell us what was wrong with him until we mentioned to one of the doctors he was off balance, this is when they told us to schedule MRI scan in 3 weeks.We couldn’t wait that long and immediately took him to the ER. In my 37th week of pregnancy the MRI showed that my sweet 4 year old son had a brain tumor (medulloblastoma).
On October 14th he had brain surgery to remove the tumor. Surgery went good as far as they can tell, however Preston will be needing to have radiation and chemo treatments in Seattle for the next year. He will also require physical and speech therapy, because right now he can’t walk or talk since the surgery. Throughout this year there will be appointments and time off work needed, gas money, medical expenses, etc...
We appreciate any help during this hard time. And truly hope that Preston can recover and be the happy spirited boy he was before all of this happened.
Kaydence-Lynn was born September 25, 2014 to Katherine Warmuskerken & Mason Willis. Around March 2015 her parent's thought something was wrong and took her to see an eye doctor in Albany, GA. That particular doctor told her parents that he thought she was blind.
On May 20, 2015, Kaydence-Lynn went to see an eye doctor for testing at the children's hospital in Atlanta. It was at that moment her parent's heard the dreadful news that no parent wants to hear. Kaydence-Lynn was diagnosed with optic nerve hypoplasia meaning her optic nerve never fully formed.
As of May 28, 2015 her parent's have learned she will face multiple upcoming appointments out of town to ensure she will not have developmental delays, and to teach her parents how to not only overcome this obstacle, but teach them how to teach her. Her parents are also seriously considering leaving their home and jobs to move to Atlanta where Kaydence will be able to attend a school for the blind.
The first person the CRS Foundation is helping is a young (12 years old) lady named Alyssa Muder. Alyssa was diagnosed with Ewing's Sarcoma of her leg on November 23 2011. As of today she is not yet in remission, but recent lung scans appear to be clear.
She had a surgical procedure soon after being diagnosed. They replaced her leg bone with a cadaver bone. Unfortunately the cadaver bone did not take. She was then scheduled for a fibula-graft surgery on December 20th. That procedure had to be cancelled because Alyssa wound up developing pneumonia. The pneumonia has since be cured and she is now scheduled for the fibula-graft on January 24th 2012. During this surgery they will also insert a larger rod into her leg.
Alyssa's Dad (Todd a driver engineer for the Marion County Fire and Rescue Dept) told me she has a new boyfriend and he has helped improve her emotional and mental wellbeing. Her Mom (Lori a registered nurse) and older sister Jessica along with Todd, friends and family have been a great support team during this very special challenge.
While the spirit and faith of this remarkable young lady and her family cannot be compromised,they have made tremendous sacrifice and are being challenged financially. It is for this reason The CRS Foundation has decided to give a small gesture of support. We are donating 2 gift cards to the Muder Family. A $250. Publix Foodstores Gift Card and a $250. BP Gas Card.
We ask everyone involved in the CRS Foundation as well as anyone else that might read or hear this story to please keep Alyssa and her family in your prayers. Her Mom started a facebook page: Prayers for Alyssa. Please visit that sight and share in the prayers.
|St. Judes Children Hospital||$11,000.00||2012 - 2015|
|Derek Watson||$2,000.00||2012 - 2015|
|Damien Gonzalez||$1,000.00||2012 - 2015|
|Chris Enhelmier||$1,000.00||2012 - 2015|
|Motivational Recovery Environment||$2,500.00||2012 - 2015|
|Ryan Duffy - (Deceased)||$1,000.00||2012 - 2015|
|Lilly LaRue - (Deceased)||$1,000.00||3/9/15|
|Kids Need More||$2,500.00||8/4/15|
|Justin and Jason Leider||$1,000.00||11/20/15|
|Kaydence-Lynn Nicole Willis.||$1,000.00||1/12/16|
|Raena Mae Chow||$1,500.00*||3/24/16|
|Preston Jace Scott||$1,250.00*||4/13/16|
|Nikol Natali Culver||$1,500.00*||4/13/16|
|Addilyn Grace Jodoin||$1,750.00*||6/15/16|
|Zay'myah Valentin (Deceased)||$1,750.00*||7/4/2017|
|Gabriel James Alemany||$1,000.00||5/25/2018|