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Inspiring Hope: Meet Our Armer Kids

Stories of Resilience

In the hearts of our Armer Kids, you’ll find stories of unwavering courage and resilience that inspire hope in all of us. These young warriors face their journeys with determination, grace, and an indomitable spirit that lights up even the darkest of paths.

Every picture you see represents a story of triumph, a testament to the strength that resides in each child we’ve been privileged to support. Click on their picture to read their full story and discover the incredible journeys they’ve embarked on, reminding us all that no child is ever alone in their battle against extreme medical conditions.

Through the collective efforts of our community, we’ve become a part of their stories, offering solace, relief, and a promise of better days ahead. As you explore the lives of our Armer Kids, you’ll witness not only their challenges but also their triumphs and the boundless potential that shines through when we stand together to make a difference.

Diagnosis: Diagnosis: Gastroschisis

Baby Judah

Meet Baby Judah - Diagnosed at 20-week anatomy scan with Gastroschisis

Baby boy Judah, who is currently still in his mom’s belly, she was diagnosed at her 20-week anatomy scan with Gastroschisis. This means his intestines are growing on the outside of his body. Due to this diagnosis when he is born, he is going to need surgery and NICU time. According to their surgeon, he could be in the NICU for 3-4 weeks, or if there are any other complications it could be longer. He is currently being monitored by a specialist at Valley Perinatal in Chandler and at True Harmony and Wellness center. Baby Judah is expected to make his appearance around January 10th, 2024, when his mom is expected to deliver.

 

To contribute to Baby Judah, please click the button below:
Help Baby Judah
Diagnosis: Metachromatic Leukodystrophy (MLD)

Keira

Meet Keira - a 3-year-old diagnosed with Metachromatic Leukodystrophy in June of 2020.

In June of 2020, at the height of the global pandemic, the Riley family of Ahwatukee found out not one but two of their three daughters had an extremely rare terminal illness, called Metachromatic Leukodystrophy (MLD). This highly progressive and rare genetic brain disease attacks the myelin sheath in the brain and then attacks the nerve. Stripping away all learned abilities anywhere from 60-120 days after symptom onset.

While their daughter Olivia who was symptomatic had no option other than a clinical trial that may stall the progression of the disease (which was expected to take her life by the age of 6), their newborn Keira who was not symptomatic had one chance to live a normal life. That was through an experimental gene therapy treatment that was only available in Milan, Italy.

Visit this link to see the Riley’s Road to Italy

The Rileys had one month to raise hundreds of thousands of dollars to afford the treatment and move their family to Italy for 6 months to hopefully save their youngest daughter’s life.

While the Riley family did have a GoFundMe page, mother Kendra Riley found that many of her business relationships did not want to donate through that page given the percentage that gets taken out by the corporation for processing fees. And that’s where we stepped in. To provide a tax-deductible donation page with 100% of the proceeds going directly to the Riley family. By the end of the month, we helped them raise over $200,000, they achieved their goal and they moved to Italy on August 15, 2020. Keira became the 31st child in the world to receive this treatment.

Today, Keira is living the life of a completely healthy 2 year old girl; walking, talking, running, climbing, playing with their oldest sister Eva and is enrolled for preschool in the fall – all things Olivia never got the chance to do because this disease stole all of her abilities away within 6 months of symptom onset. Their lives are very bittersweet as they see the great progress Keira makes while Olivia is enrolled in Hospice and they continue to keep her smiling and happy for as long as they have her.

 

To contribute to Keira, please click the button below:
Help Keira
Diagnosis: B-Cell Acute Lymphoblastic Leukemia

Brooks

Meet Brooks - a 5-year-old battling B-Cell Acute Lymphoblastic Leukemia in March 2022.

His leukemia treatment is ever-changing.  He receives chemotherapy treatments through his port and spine.  These treatments are brutal on his body and cause him to lose his gross motor skills and suffer from nerve pain.

 In November 2022, Brooks began a maintenance phase of treatment which is much easier on his body and completed at home.  Brooks will continue to take his daily 6mp (chemo) and methotrexate (chemo) once a week until May 2024.  His oncologist has encouraged his family to “live life as normal as possible” so Brooks will begin attending preschool twice a week.

To contribute to Brooks, please click the button below:
Diagnosis: Ewing Sarcoma

Taryn

Meet Taryn - a 17-year-old student at Desert Vista High School battling Ewing Sarcoma.

She began having pain in her right shoulder in September and progressed over the next two weeks; a lipoma found on her right shoulder blade caused concern, so her doctor suggested surgery to remove it.  A few days before surgery, Taryn began having intense pain and vomiting, so they rushed to the ER in Ahwatukee.  A CAT scan of her torso showed a large mass wrapped around her entire abdomen, and we went directly to Phoenix Children’s Hospital.  After two weeks, Taryn was diagnosed with Ewing Sarcoma on November 5th and began chemotherapy the next day.  Taryn is undergoing chemotherapy to shrink the tumor, followed by radiation or surgery and potentially four more months of chemotherapy.

Taryn has grown up in the Ahwatukee area, attending many schools within the Kyrene, Horizon, and Tempe school districts.  She was an active lacrosse player in middle school and played through her sophomore year at Desert Vista, where she turned her sights toward working.  At 16, Taryn enjoyed working at the Ahwatukee Dunkin Donuts for the summer and at Carrabba’s and Philly’s during the school year.  With her recent diagnosis, she is currently not working and attending school online to complete her senior year.  Taryn plans to graduate from Desert Vista High School, take a few business classes at Chandler-Gilbert community college, work full-time, and travel to Europe for a month.  She is also interested in becoming a Realtor.

To contribute to Taryn, please click the button below:
To learn more about Ewing Sarcoma, click here

 

 

Diagnosis: Acute Lymphoblastic Leukemia

Jake

Meet Jake - a 17-year-old student-athlete at Desert Vista High School.

Jake is a smart, funny, athletic, kind, and loving kid. His smile and energy are contagious, and he was recently diagnosed with Acute Lymphoblastic Leukemia on November 11, 2022.

His body makes too many white blood cells which doesn’t leave room for his platelets and red blood cells to carry out their functions to keep him healthy. This diagnosis has blindsided Jake and his family. He recently spent 10 days in the hospital undergoing round-the-clock care in addition to several rounds of chemotherapy.

Jake is a varsity baseball player at Desert Vista High School and misses being on the field with his teammates more than anything. Jake will undergo 6-9 months of chemotherapy and remain in maintenance chemotherapy for 2.5 years.

Jake’s goal is to beat Leukemia and play baseball for Paradise Valley Community College, which he recently committed to.

To contribute to Jake, please click the button below:

 

To learn more about Acute Lymphoblastic Leukemia, click here

 

 

 

Diagnosis: Epilepsy

Lily

Meet Lily - an 11-year-old battling Epilepsy.

A few days shy of her first birthday, she had her first epileptic seizures.  After many sleepless nights and long days, her doctors found a combination of medications to control her seizures.  Lily managed to stay seizure-free for over six years while moving from Hawaii to Colorado, California, and now residing in Arizona. 

When she was in 3rd grade, her doctors weaned her off her medications, and she began having minor headaches.  The intensity and frequency increased over a few months until a severe migraine caused vomiting, speech, and mobility issues, and she could not recognize family members.  A test confirmed her Epilepsy had returned and the migraines were causing her to have Ataxia – or severe imbalance.

She participates in weekly physical and occupational therapy appointments to improve muscle tone, coordination, and strength.  Lily still experiences seizures every few days to a few weeks.  Her migraines have improved drastically though she still reports daily pain.  Within the last year, she was also diagnosed with a hypermobility disorder and struggled with mental health.  Her family is training a service dog to allow Lily more independence at school and home.  Her service dog would alert her to seizures, fainting/dizzy spells, and hopefully, even help her mental health.

To contribute to kids like Lily, please click the button below:

 

To learn more about Epilepsy, click here 

 

 

 

 

Diagnosis: Ewing Sarcoma

Julia

At just 15 years, Julia was diagnosed with Ewing Sarcoma after a six-inch tumor on her pelvis was found.

Meet Julia. After various scans and bloodwork, her physicians concluded it had not spread but was localized in her hip. She learned treatment would consist of six rounds of chemotherapy over 3.5 months and then surgery to remove it. With each round of chemotherapy began the grueling side effects, but as each round ended, the tumor began shrinking. It shrunk to 13% of its original size and is necrotic (dead) and cystic (fluid-filled). 

On December 2, 2021, Julia underwent a 14.5-hour surgery to remove the tumor and then endured a “double-barrel surgery” to stabilize her pelvis. She has six screws and one plate in her pelvis, plus one screw by her ankle to stabilize it. Julia is currently on the Oncology floor of Phoenix Children’s Hospital and recovering from her grueling surgery. 

Julia will be in a wheelchair for three months, crutches another three months, and then a good amount of Physical Therapy to be able to walk again. 

To contribute to kids like Julia, click the button below:
To learn more about Ewing Sarcoma, click here

 

Diagnosis: Neuroblastoma

Deyla

Meet Deyla- a 5-year-old with Neuroblastoma. In December of 2022, Deyla woke up with a leg ache and saying it hurts to walk and complained over the next few days.

After being told it was probably growing pains, Deyla started to see a chiropractor. Fast forward to the end of June 2023 Deyla was taken to the emergency room crying saying her chest was hurting so an x-ray was done.

Deyla was transferred to PCH for more advanced x-rays and a second opinion of the results. PCH performed a cat scan and a MRI. That is when Deyla’s mom found out her daughter had a mass in her chest, which could be a cancerous tumor. They were admitted and a biopsy was completed, a few days later she was diagnosed with a cancerous tumor called neuroblastoma, which is a very aggressive cancer. Deyla will have a long road of chemo ahead of her.

 

To contribute to Deyla, please click the button below:
Help Deya
To learn more about Neuroblastamo:
Neuroblastoma – Symptoms and causes – Mayo Clinic

 

Diagnosis: Alveolar Rhabdomyosarcoma

Kennedy

Meet Kennedy - a 7-year-old battling Alveolar Rhabdomyosarcoma.

In January 2023, Kennedy discovered a ‘bump’ on her buttocks and visited her pediatrician to have it checked out.  Kennedy’s pediatrician believed it to be a cyst, but recommended an ultrasound.  While her parents waited for the results, the ‘bump’ grew, and an MRI with and without contrast was completed.  On February 24th, Kennedy’s pediatrician called with news that the ‘bump/cyst’ was a malignant tumor called Rhabdomyosarcoma and recommended a biopsy at Phoenix Children’s Hospital.  Kennedy was admitted to the oncology floor, and on March 1st, the biopsy confirmed – Alveolar Rhabdomyosarcoma, Stage 3/Group 3. 

Kennedy’s treatment plan will consist of 60 weeks of chemotherapy, surgery, radiation, and 40 weeks of low-dose maintenance chemotherapy. 

Update on Kennedy’s journey: She has had to have her ovary surgically removed to harvest it for fertility preservation in the future. She has also completed 20 days of radiation at Mayo Clinic. Kennedy is continuing to do an amazing job with her chemotherapy, and she still has about 6 months left of intravenous chemo and then she will move on to the maintenance chemo for the duration of her treatment.

To contribute to Kennedy, please click the button below:
To purchase a Kennedy T-Shirt, please click the button below:
Kennedy's T-Shirt

 

To learn more about Alveolar Rhabdomyosarcoma, click here

 

 

Diagnosis: Perthes Disease

Riley

Meet Riley. An energetic 12-year-old battling Perthes disease.

a rare childhood disease affecting the blood flow to the femoral head causing it to crumble and die. In the past two years, she has endured various surgeries and treatment plans, such as core decompression with bone marrow aspiration, hip distraction with an ex-fixator, and physical therapy twice a week; she is still in tremendous pain and misses multiple school days.

Ultimately, Riley needs a full-hip replacement to alleviate the debilitating pain she endures, but because of her age, it cannot happen until her growth plates close at age 15. Riley’s next step is an Osteotomy since her bone is growing back, but not enough to fit in her socket. According to her doctors, an Osteotomy procedure will delay the need for a full-hip replacement until her mid-twenties.

To donate to Riley, click the button below:

 

 

To learn more about Perthes Diseaseclick here

 

 

Diagnosis: Hepatoblastoma

Nash

Meet Nash - a 2-year-old battling Hepatoblastoma.

In April 2022, a large knot in Nash’s side warranted a quick trip to his pediatrician and a​recommendation for an x-ray or ultrasound. His CT scan shows four large tumors, and his blood results predict Hepatoblastoma or cancer within his liver.

Easter Sunday holds a liver biopsy and MRI, both crucial to determining a diagnosis and go-forward plan. His test results confirm the doctor’s suspicions – Hepatoblastoma. During surgery, the surgeon found resection is not possible. One tumor is closer to the main blood vessel than expected – meaning it is unsafe to remove. The surgeon had to close him up without completing the resection. Nash needs a liver transplant.

Nash received a liver transplant in November 2022 and completed a total of (10) rounds of chemotherapy. His family and PCH staff aka his “hospital friends” gathered as he rang the cancer bell in January 2023. 

Nash just celebrated his 3rd birthday with his “happy liver” as he likes to call it. He remains cancer free with monthly bloodwork to continue to check his liver levels and AFP which checks for cancer in his body. He is loving to be a kid again and keeps up with his big brother, Knox. Nash will start preschool this fall for a couple of days a week and no longer has to be isolated from others. He will also be a big brother in October as his family welcomes Baby Sister into the world. 

Nash’s family would like to thank everyone for their love, support, and prayers over the last year. God is so good. Also big thank you to all organ donors and their loved ones who make the ultimate sacrifice and of course, those of you have donated blood and platelets. You are a lifesaver. 

As part of Nash’s story he has collected over 600 Beads of Courage which shows his cancer journey from diagnosis to ringing the bell.

Here is a breakdown of some of his beads:

  • 130+ Days inpatient at PCH = yellow 
  • 95+ Days of isolation at PCH = green
  • 50 “Pokes” to access his port = black
  • 43 Days of chemo treatment = white 
  • 30+ NG “tubie” replacements = blue 
  • 14 Hospital admission/discharges = square hearts
  • 35 Clinic Visits = blue
  • 9 Platelet Transfusions = red
  • 10 Blood Transfusions = red
  • 186 Shots given at home = bumpy
  • 4 Blood Drives = big hearts
  • 2 Surgeries = blue star
  • 1 Trip to CHLA = fish
  • Many Music therapy = rainbow
To contribute to Nash, click the button below:
Help Nash
To purchase an I AM STRONG shirt supporting Nash, please click the link below
To learn more about Hepatoblastomaclick here

 

 

Diagnosis: Postural Orthostatic Tachycardia Syndrome

Hope

Meet Hope - a 15-year-old battling Postural Orthostatic Tachycardia Syndrome.

In December 2020, an ER physician at Phoenix Children’s Hospital diagnosed her headaches and dizzy spells as Juvenile Pilocytic Astrocytoma (JPA).  Just two days after her diagnosis, Hope underwent surgery to remove the tumor, and the surgeon also found Hydrocephalus – a condition where extra fluid places pressure on the brain.  She endured a craniotomy with two plates inserted and a three-inch incision behind her right ear to remove the tumor.  Hope spent almost a week in the ICU as she recovered.  Hope underwent MRI scans every three months post-op for two years.

While her tumor has not grown back, she continued to experience ongoing headaches/migraines – even with several medications and excruciating occipital nerve-blocking injections in the back of her head, but nothing worked.  She continues to leave early from school or completely misses out due to headaches, dizziness, chest pains, and heart palpitations, which led her doctors to a new diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) in December 2022. 

 

To contribute to Hope, click the button below:

 

Help Hope

 

To learn more about Postural Orthostatic Tachycardia Syndrome, click here
To learn more about Juvenile Pilocytic Astrocytoma, click here

 

 

Diagnosis: Epilepsy

Gracelyn

Meet Gracelyn - a 3-year-old battling Epilepsy.

She started having seizures when she was just two months of age.  After many months of neurology visits, EEGs, CT Scans, MRIs, bloodwork, and genetic testing, Gracelyn received her diagnosis and is now dependent on doctors, therapy, and medications for the treatment of Epilepsy.  

They discovered Gracelyn suffered a traumatic brain injury of undetermined origin early in her life, likely in utero, which uncovered a nerve defect in her brain and scarring called Gliosis which leads to Epilepsy.  As Gracelyn matures, she will inevitably spend more time under the watchful eye of her young, single mother, who served in the US Navy as a second-class petty officer in Norfolk, VA.  To aid in the improvement of Gracelyn’s life, her grandparents purchased an 8-week-old Labrador Retriever puppy.  He is training to qualify as a service animal to carry her emergency seizure medications, alert her to seizure activity, summon help, and provide comfort while Gracelyn is seizing.  Service animal training is ongoing for the puppy’s first two years.

To donate to kids like Gracelyn, click the button below:

 

To learn more about Epilepsy, click here 

 

 

 

 

Diagnosis: Epilepsy & Cerebral Palsy

Catalina

Meet Catalina. At 15-weeks-old, Catalina was rushed to Banner PICU with multiple seizures and vomiting.

During her time there, she underwent a battery of tests, including EEGs to monitor brain activity, MRIs, and various other tests to determine the cause of her seizures. She spent more than a week at Banner PICU as they treated her ongoing seizures with medication and was transported to Phoenix Children’s Hospital for additional care and treatment.

During her stay at Phoenix Children’s Hospital, Catalina continued to have multiple seizures, temperature spikes, and ​medication adjustments to keep her seizures at a minimum. After another round of EEGs, MRIs, and other tests, they found inflammation in the white matter of her brain due to an infection. The inflammation in her brain has caused her sight, hearing, and limb movement control to be impacted. She underwent surgery to have a G-tube (permanent feeding tube) inserted directly into her stomach for nutrients, medications, and fluids.

Catalina is a happy toddler and continues to improve with physical therapy, medication, and ongoing monitoring. 

To contribute to kids like Catalina, click the button below:
To learn more about Epilepsy, click here 
To learn more about Cerebral Palsyclick here

 

Diagnosis: Acute Myeloid Leukemia 9/15/07 - 6/28/21

Logan

At 10-years old, Logan was kind, caring, and full of life. He enjoyed school, swimming, mountain biking, superheroes, hanging with his friends, sister, and dogs.

He had a passion for music, the clarinet, and dancing – even breaking out into an impromptu dance for all to see.

But in July 2018, after a week of fevers and tonsillitis, Logan’s pediatrician ordered extensive lab work. Just 9-weeks before his 11th birthday, he was diagnosed with Acute Myeloid Leukemia (AML). Logan immediately began chemo treatments and his “fighter’s mentality” helped him through six months of treatment. After reviewing his blood work, his doctors declared him “CANCER FREE.” He would continue with routine check-ups and mild chemo to keep cancer away. Logan and his family resumed life as before – enjoying family time, vacations, cuddling with his two dogs. In March 2019, he even returned to his elementary school – Kyrene De La Sierra. In August 2019, Logan started 6th grade in remission and anxiously awaited his 12th birthday in September. When that day came, Logan celebrated with a large party filled with friends, family, tacos, cupcakes, and video games. It was a grand day of celebrating all Logan had accomplished!

In December 2019, during routine lab work, Logan relapsed. He had stayed in remission for 8-months, but new Leukemia cells were in his blood. With this relapse came another round of chemotherapy and the potential for a bone marrow transplant. Logan spent all of December (including Christmas) at Phoenix Children’s Hospital (PCH) with continued treatments and ensuring no new infections. He was released from PCH in early January 2020 after spending 35 days in the hospital and receiving 5-doses of chemotherapy. He faced every difficulty with a dose of sarcastic humor and courage. About a week after his release, the family received great news. Logan was 100% matched with a bone marrow donor and would receive a bone marrow transplant soon. However, his most recent lab results showed Leukemia cells still present in his bone marrow, which postponed the bone marrow transplant. 

At the end of January 2020, Logan entered the hospital for another round of chemo treatments, and at the beginning of March 2020, he was released and began outpatient chemo treatments. In early April 2020, his bone marrow biopsy came back negative. Logan was eligible to receive a bone marrow transplant from his 100% matched donor in May 2020.

After his transplant in May 2020, Logan battled through the recovery process, and in June 2020, he was again declared “CANCER FREE” by his doctors. Another milestone for Logan and his family. He continued with routine check-ups and chemotherapy infusions to ensure cancer remained away. He continued to regain his strength and celebrate being home with his family and friends. In September 2020, Logan celebrated his 13th birthday with a car parade. It was a special day for Logan, and he enjoyed seeing his friends and family. 

From September 2020 through January 2020, Logan continued to recover from Leukemia and live his life to the fullest. Logan enjoyed another eight months in remission, but in February 2021, his bone marrow biopsy showed another relapse of Acute Myeloid Leukemia Cells. Treatment options were limited but, his doctors agreed that another treatment of chemo drugs and ultimately another bone marrow transplant from a direct DNA source (mother, father, or sister) was best for Logan. This treatment would place Logan in the hospital for six months.

Logan began his chemo treatments in March 2021. As treatments continued, Logan would have good and bad days, yet his positivity and warrior mentality prevailed through it all. By mid-April 2021, doctors found excess fluid around his heart, an infection, and biopsies showed more Leukemia cells. In June 2021, with Logan’s cancer spreading throughout his body, he was admitted to the CAR-T trial in Los Angeles. After being admitted to Children’s Hospital Los Angeles, his health rapidly deteriorated. He was in the ICU for three days, but the cancer was too strong, his body too weak. Logan chose to go home, to his house – his room. He never gave up – he fought till the end.

As his family grieved, planning for a celebration of life commenced just as Logan had requested. And on June 28, 2021, his family, friends, and many, many more of his supporters came together to celebrate his life. 

To contribute to kids like Logan, click on the button below:
Donate

 

To learn more about Logan’s Memorial Fund, click here
To join the Bone Marrow Registry, click here

 

Diagnosis: Cystic Fibrosis & Pancreatitis

Kennedy H

Meet Kennedy - a 8-year-old battling Cystic Fibrosis & Chronic pancreatitis.

In February 2021, Kennedy was hospitalized at Phoenix Children’s Hospital, with her first bout of severe pancreatitis.
Having been diagnosed with cystic fibrosis at just one week old, Kennedy and her family were very familiar with Phoenix Children’s, but Kennedy had never been hospitalized there for pancreatitis.

For about a year after that, Kennedy was doing well, and they were hopeful that it was just a one-time occurrence. Then in April of 2022, Kennedy was admitted to Ann and Robert Lurie Children’s Hospital in Chicago, for another bout of pancreatitis while they were visiting family in Illinois. At that point, Kennedy’s situation was critical. Her lipase levels were rapidly increasing, with the highest level being 3500 (normal levels should not exceed 53). At that time, Kennedy was placed on a PCA (patient-controlled analgesia pump) because her pain was so unmanageable.

After a 10-day hospital stay in Chicago, they were able to finally get her lipase levels under control and bring Kennedy back home to Phoenix. Three weeks later, in May 2022, Kennedy was back in Phoenix Children’s Hospital for another bout of pancreatitis. She went on to have three more bouts of pancreatitis in 2022 and three in the beginning of 2023, all of which required hospitalization.

Wanting to find answers, they started exploring various pancreatic programs throughout the United States and found the pancreas care center at Cincinnati Children’s Hospital. Kennedy was assessed by the Cincinnati Children’s Hospital Pancreatic Center in April 2023, where numerous tests were run, including genetic testing. Kennedy was found to have a genetic marker (CPA1) that predisposes her to early onset pancreatitis, along with having cystic fibrosis, which can cause complications with the pancreas.

While they were at Cincinnati Children’s, the team also did an endoscopic retrograde cholangiopancreatography (ERCP), where they found permanent damage to her pancreatic ducts, resulting in a diagnosis of chronic pancreatitis.

In May of 2023, the pancreas care team at Cincinnati Children’s Hospital determined that Kennedy is a candidate for total pancreatectomy with islet autotransplantation (TPIAT), which includes the removal of her pancreas, spleen, appendix, and gallbladder. She will be having the surgery in September 2023. Kennedy and her dad will have to be in Cincinnati for eight to 12 weeks while she undergoes the procedure, recovers and attends post-op appointments in the weeks that follow the TPIAT surgery.

To contribute to Kennedy, please click the button below:
Help Kennedy
To purchase a Kennedy T-Shirt, please click the button below:
Kennedy T-Shirt
Diagnosis: Juvenile Pilocytic Astrocytoma

Kyla

Meet Kyla - a 7-year-old battling Juvenile Pilocytic Astrcytoma who endured emergency brain surgery.

Meet Kyla – a 7-year-old battling Juvenile Pilocytic Astrcytoma who endured emergency brain surgery to place a shunt to relieve the swelling in her brain. After speaking with a Neurosurgeon and Oncologist, she was diagnosed with Juvenile Pilocytic Astrocytoma, and another surgery scheduled to remove the tumor.

Just another routine scan and Kyla’s world changed again. Doctors found a 3mm growth that wasn’t there on her last scan on 11/16/22. What does this mean, doctors are going to way and scan again in 3 months to see if it has grown and how to proceed.

After surgery, Kyla had a long road ahead of her with ongoing MRIs to monitor for tumor growth, headaches, or other issues. Her next MRI is in May 2023, and she attends physical therapy every other week. She requires eye appointments every three months with an Optical Coherence Tomography scan to monitor her retinas and is on the waitlist for occupational therapy at Phoenix Children’s Hospital. 

Kyla’s mother Courtni, is a full-time caregiver to their two daughters (Kloe and Kyla), and her father, Spencer, is a military veteran and the sole financial provider for their family.

To donate to kids like Kyla, click the button below:

 

To learn more about Juvenile Pilocytic Astrocytoma, click here

 

Diagnosis: Cerebral Palsy and Auto-Immune Disorder

Andrew

Meet Andrew - a 16-year-old who developed Cerebral Palsy after suffering a brain injury just after birth.

His auto-immune disorder was not accurately diagnosed until about 2 years ago. His conditions are non-life threatening, but they are life-limiting, negatively impacting his quality of life.

At the age of 4 years old his parents made the decision to switch Andrew to homeopathic medical care, as western medicine was making him feel worse. However, this decision has left Andrew‘s parents, Andrew Sr. and Kellie, drowning financially. They have had to pay for ALL of Andrew’s medical treatments entirely out-of-pocket for the last 12 years. Andrew Sr. is a high school teacher and Kellie previously worked as a mental health/social worker for children before she had to leave the workforce to be a full-time caregiver for Andrew.  

To learn more about Andrew’s health journey visit his blog at Pray For Andrew.

To contribute to Andrew, please click the button below:
To learn more about Cerebral Palsyclick here
Diagnosis: Mitral Valve Disease (MVD), Ventricular Septal Defect (VSD), and Patent Ductus Arteriosus (PDA)

Penelope

Meet Penelope - a 1-year-old battling Mitral Valve Disease (MVD), Ventricular Septal Defect (VSD), and Patent Ductus Arteriosus (PDA).

During a 20-week ultrasound, a heart defect was identified, and her family was told that immediate surgery at birth would correct her issues. After two months at home, Penelope began breathing heavily, failing to gain weight, and was admitted to Phoenix Children’s Hospital during Easter weekend. 

We found that Penelope did not have the initial defect we suspected, but rather severe mitral valve disease, a VSD (hole in the heart), and later developed heart block – a condition where her heart cannot maintain a regular heartbeat rhythm. Over our 5-month inpatient stay, Penelope fought hard through 5 different heart surgeries – including repairs, a mitral valve replacement, and placement of a permanent pacemaker. Penelope has suffered seizures due to blood loss during one of her surgeries. With medication, she has not had any further seizure activity since, but it is unknown whether there might be permanent brain damage as a result.

With a new valve and her pacemaker keeping her safe, Phoenix Children’s Hospital discharged us with a hefty medication regimen and NG nasal feeding tube. With ongoing therapy, Penelope is making huge strides to overcome major developmental delays. Her strength and determination are inspiring, and we are truly blessed to be her parents.

We are so blessed to be home with Penelope. She is an incredibly strong fighter! 

To contribute to Penelope, please click the button below:
To learn more about Mitral Valve Disease, click here

To learn more about Ventricular Septal Defect, click here


To learn more about Patent Ductus Arteriosus, click here
Diagnosis: DHPR Deficiency

Oliver

Meet Oliver - a 2-year-old battling Dihydropteridine Reductase Deficiency (DHPR).

Just three days after birth, his parents received a phone call from the lab saying his newborn screening was abnormal. After another test, Oliver tested positive for PKU, a rare inherited disorder causing an amino acid called phenylalanine to build up in the body, which causes brain damage.

After a strict diet, Oliver’s parents, Vince and Maria, were told this was a manageable disorder. To manage it, Oliver needed weekly blood draws to ensure his PHE levels were normal. At seven months old, Oliver’s PHE levels continued to be lower, which led his Genetic Doctor to run a DNA test. Oliver tested positive for Dihydropteridine Reductase Deficiency (DHPR), which impacts the neurotransmitters vital for healthy brain development. 

There is no cure or standardized treatment. The medications prescribed to Oliver attempt to replace the missing neurotransmitters and help his body absorb the medication. Unfortunately, these medications are generally used to treat Parkinson’s disease, and there is not a lot of information in regard to the effects of long-term use. 

To contribute to kids like Oliver, please click the button below:

 

To learn more about Dihydropteridine Reductase Deficiency (DHPR), click here

 

Diagnosed with Ewing Sarcoma

Vik

Meet Vik, he was diagnosed with Ewing Sarcoma.

Ewing sarcoma is a cancerous tumor that grows in the bones or in the tissue around bones (soft tissue)—often the legs, pelvis, ribs, arms or spine. Ewing sarcoma can spread to the lungs, bones and bone marrow.

How common is Ewing sarcoma?

Ewing sarcoma is the second most common type of bone cancer in children, but it is very rare. About 200 children and young adults are found to have Ewing sarcoma each year in the United States.

  • About half of all Ewing sarcoma tumors occur in children and young adults between ages 10 and 20.
  • This type of cancer is rarely found in African-Americans and Asian-Americans.
  • It affects slightly more boys than girls.
  • It does not appear to be inherited (passed down in families).
  • Although not often seen, Ewing sarcoma can occur as a second cancer, especially in patients treated with radiation therapy.

What are the symptoms of Ewing sarcoma?

If your child has Ewing sarcoma, the following symptoms may be present:

  • Swelling and soreness around the tumor area (commonly mistaken for a sports injury or the “bumps and bruises” every child gets)
  • A low fever that at first may seem to be caused by an infection
  • Bone pain, especially pain that worsens during exercise or at night
  • Limping, which is caused by a tumor on a leg bone
Diagnosis: Hypoplastic Left Heart Syndrome

Ruby Anne

Ruby Anne was born with Hypoplastic Left Heart Syndrome (HLHS).

HLHS affects normal blood flow through the heart, and as the baby develops during pregnancy, the left side of the heart does not form correctly. This condition is one type of congenital heart defect. Her dad Kevin is a pediatric nurse, and her Mom Jessica is a stay-at-home mom to their 19-month-old son Teddy and Ruby Anne. Because of her heart condition, Ruby underwent open-heart surgery at only five days old and did not go home from the hospital until she was over five weeks old. 

She will have her second surgery in August, and she has already had two additional hospital stays because of mild viruses that caused her oxygen to dip dangerously low. Because of this and the young age of Teddy, Kevin has had to take extended family leave time without pay. 

We ask that you please pray for Ruby’s recovery and know that any donation, regardless of how small, is greatly appreciated. Any money donated will go towards expenses, such as gas, food at the hospital, and the bills from either Kevin’s time off work or medical bills.

To contribute to kids like Ruby Anne, please click the button below:

 

 

To learn more about Hypoplastic Left Heart Syndrome (HLHS), click here.

 

 

 

 

 

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