Recipients
Avery
Avery was born in September of 2016. Growing up she was happy and healthy under their world was turned upside down. In February of 2018, she was diagnosed with a rare type of childhood cancer called Rhabdomyosarcoma. The cancer was in her face muscle specific; however, the type of cancer in general develops from skeletal muscles. Avery had to endure intense chemotherapy to shrink the tumor, and it worked for a short amount of time. It once grew out of control to the point that they could no longer help Avery get rid of the tumor. The family decided to place her in hospice care at home, until she passed away in the hospital in June of 2019. Before her passing, Avery’s family received crafts, outfits, and games from Rachel’s Care Packs.
Bo & Leo
Leo and Bo are both brothers that suffer from different illnesses. Leo has a genetic condition called Noonan Syndrome as well as a blood disorder. Noonan Syndrome can affect the body in a wide variety of ways including the prevention of normal development of various parts of the body. Bo was diagnosed with Acute Lymphoblastic Leukemia in August 216, the most common form of childhood cancer of the white blood cells. Together they help each other conquer their illnesses by going to the movies, playing games, and going to Culvers! Rachel’s Care Packs was able to provide them with blankets, books, a lightsaber, Uno Flip, and football to enjoy during the school year and beyond.
Dysautonomia, Colonic pseudo obstruction disorder, and gastroparesis are just a part of Brie’s life. Dysautonomia refers a broad disorder of the autonomic nervous system. There are changes in blood pressure, fainting, and headaches. Colonic pseudo obstruction disorder is gastrointestinal disorder that affects the muscular contraction in the GI tract resulting in them becoming inefficient and altered. Gastroparesis is a condition in which one’s stomach does not properly empty because of the muscles. Though these consume much time, she loves to dance, be social, and be with her support dog, Breezy. RCP was able to provide comforting items like blankets and pillows and activities to keep her and her family busy during hard times.
Brie
Easton
Easton was diagnosed with low grade pilocytic astrocytoma, a brain tumor in the center of his brain, pressing on his hypothalamus. His neurofibromatosis is to blame for his tumor. He has NF Type 1. The protein in his DNA doesn’t stop cells from multiplying, so tumors can pop up at any time during his life, mostly growth along the nerve lines. Easton does not let his hydrocephalus and diencephalic syndrome, along his other medical issues, stop him from being a loving and caring boy. Easton opened a backpack full of bath toys, clothes, and Paw Patrol games.
On January 17th, 2012 Emma was diagnosed with Acute Lymphoblastic Leukemia at 16. She spent 2.5 years fighting with 10 intense months of chemo then maintenance chemo the rest of the time. Cancer-free, Emma returned to the hospital for a check-up but her platelets were concerning. On December 27th. 2016, she relapsed. Having to leave college and her friends, she endured 6 months of intense chemo. She was in need of a bone marrow transplant as the cancer was not gone after the first two months. Days before the transplant start date, her leukemia was no longer detectable so the transplant preceded. Now years passed transplate, she is back in college to serve as an oncology nurse. Rachel’s Care Packs donated comforting items and distracting items to keep her mind off of the bad.
Emma
Katie
Katie grew up with scoliosis. At 15, she underwent a 7 hour spinal fusion surgery to correct her 52° curve. She went from having a lung that was so compressed that it was functioning at 50%, a tilted heart, having my pelvis inside of my ribs, and a left leg that was functionally a few inches shorter than the other due to hip imbalances to being upright and gaining three inches in height in a matter of hours. After surgery she was also diagnosed with POTS, FND, and dysmotility. She currently uses a wheelchair as the best way to keep her engaged in social activities. She was an avid swimmer and even though she has not swam competitively, she hasn’t let anyone stop her from other goals and dreams that she has in life
Kelci
Kelci has Cystic Fibrosis, a genetic condition that affects the respiratory and digestive system. The thick, sticky mucus makes it difficult to breathe. Rachel's Care Packs was able to provide Kelci with games and activities to keep her busy during her stays at Children's Hospital and during treatments at home.
Keni
Keni has Encephalopathy, a rare brain and muccular disordered paired with Benign Congenital Hypotonia, a decrease in muscle tone detected during infancy without an underlying cause. Her body lacks muscle tone and control. She gets exhausted very easily and communicate/cognitively processes like a 2 year old. Recently, her genetics doctor discovered that she has a gene mutation on her 12th chromosome, GRIN2B. It is responsible for encoding a protein that forms a receptor responsible for sending chemical messages to the brain. Her smile stretched for miles and her kind soul works for everyone that matters. Rachel’s Care Packs was able to provide a care package for their first local family. Surprised with stimulant toys, bears, and more, she showed that she won’t back down from a challenge.
Liam
Liam was diagnosed with Rhabdomyosarcoma at 13 month old. He endured a year of intense chemo, radiation, and multiple surgeries. Liam entered remission in September 2014, but relapsed after 2 1/2 months. In that small amount of time his tumor grew back. He started intense chemo again. He needed to have his bladder, prostate, and tumor removed. Liam entered remission for a year. In August 2016 he relapsed; more chemo and radiation. There weren’t many options left. They entered a clinical trial but it did not work. On July 25th, 2017 we were admitted for our very last time. There was nothing else they could do. Liam was sent home on hospice. On Sunday, August 13, 2017 Liam passed away. He was only 4 years old. RCP was able to provide him toys, dinosaurs, and more during his treatment.
Lincoln
On 11/13/17 Lincoln was diagnosed with Acute Bilineage Leukemia, shortly after his fourth birthday. During his first year of treatment, he needed to stay overnight at the hospital 33 times. It was also broken up into six 2-month windows, each with different medications, appointments, and inpatient stays. With his complicated dual diagnosis, his treatment should be over in March of 2021 with hopes of no relapse. Lincoln received a new wardrobe, movies, candy, and toys to keep him busy during his treatment. He was very excited about all the news clothes he was given and could not wait to wear them.
Lydia
Lydia was born with Down's Syndrome and Esophageal Atresia. Her esophagus was not attached to her stomach. Lydia bravely underwent a major surgery. She did not have a Septum; therefore, there are not chambers in her heart, resulting in no flow of blood. Her oxygenated blood and saturated blood were flowing on the path of least resistance. They did indicate that the structure of Lydia’s heart was looking great with no leakage and her heart was pumping well. On top of this, Lydia was diagnosed with Atrioventricular Canal Defect, a hole in the heart. Lydia went in for open heart surgery. While she was inpatient, I was able to meet their family. Lydia received snacks, games, and educational tools to help her pass the time. Lydia is a spunky child who doesn’t let anyone stop her from anything.
Maci
Maci started showing signs of colonic issues when she was just a baby. During her toddler year, she went to many GI doctors that first said it was behavioral, next it was a dairy issue. After been referred to a motility doctor, she was living in the hospital at the age of three. After having surgery to have a cecostomy tube placed, she became to feel nauseous and struggled with eating. After playing with different factors, Maci is finally in a good place. Rachel's Care Packs was able to provide journals, books, pens, and more inspirational writing activities to keep her busy. Maci has hopes of becoming an author in the near future as her happiness comes from her creative writing.
Noelle
Noelle has diagnosed with a rare genetic disorder called Mosaic Monosomy 7 that affects her bone marrow function. Shortly after birth they did genetic testing, leading to the diagnoses. She in the Neonatal Intensive Care Unit after receiving a bone marrow transplant several months ago as she had little to no immune system to support her. She has a heightened risk of myelodysplastic syndrome or acute myeloid leukemia. Rachel's Care Packs was able to provide much needed central line accessible clothing as well as books! Without over twelve new shirts, pants, and skirts, Noelle was able to enjoy clothing that was comfortable and was convenient to her medical needs. Soon, she should be able to go home and celebrate out of the hospital and the Round McDonald House!
Edward
Edward was born late 2019 and spent time in the NICU with hypoglycemia issues and was figuring out a plan for his renal neuroblastoma. At 6 weeks old, he underwent major surgery to remove the tumor. Shortly after, he received the news that he was cancer free! Though they still have ample appointments and scans to ensure that he remains cancer free, Edward is continuing to grow and find his personality. Edward received a new pool for the summer along with a hand knitted blanket, outdoor toys, and stuffed animals.