Inspired by Others
Touching Lives One Person at a Time
The following individuals are people who were an integral part of our journey or simply crossed paths with us. Every single one of them is a HERO, by virtue of their strength and fortitude to remain strong during their diagnosis, ensuing treatment, and their future, whatever that may look like for them. Let this be your opportunity to realize how much suffering there is in this world, how your efforts can make a difference for these families, or simply find your support in patients and families who have similar plights.
Angel Aidan Williams, BMT Osteopetrosis
Angel Amber Des Roches, BMT Cancer
Angel Ashleigh Gwin, BMT Krabbe Leukodystrophy
Angel Autumn Winchell, Pontine Brainstem Glioma
Angel Bayon Brown, Mitochondrial Disease/Medulloblastoma
Angel Bayon was born with the biggest heart and the biggest smile I have ever seen. She was also born with Mitochondrial disorder, but NEVER did any physical ailment get in the way of her busy life. She scooted her way into the hearts of every single person who ever had the fortunate opportunity to meet her. Shortly after she turned 1, the doctors added Medulloblastoma to her diagnosis and she then began a journey down a different path. This path included many surgeries, intensive chemotherapy, and eventually radiation when the chemotherapy failed her. Throughout all of this, nothing took that contagious smile away from her. Every single person who saw her fell in love with her and her wonderful, brave family. Until the very moment Bayon received her wings and flew to Heaven she fought harder than I have ever seen, and the smile was still ever-present on her sweet face. Despite intubation for respiratory failure, she still gave us hugs, smiles, winks, waves, and kisses... and could always be found with "Dog-dog" in one of her hands. Angel Bayon was relieved of her failing body and given the gift of eternal life on March 3rd, 2009, almost 2 months after her 2nd birthday. She will be dearly missed not only by her close family and friends, but by everyone who came in contact with her.
Angel Bradley, BMT ALD late diagnosis, and brother Gabe Smith, BMT ALD
Angel Bryar Martin, BMT Cancer
Angel Cadence Thomas, BMT AML M7
We met Cadence and her parents on the pediatric BMT floor at the U of M just days before Cadence lost her fight. Mary and I attended Cadence's 2nd Bday party which was a blood drive in her honor. From that moment on, the Thomas family became part of our family, supporting us through our journey as well as playing their violins at Evan's celebration.
Angel Caroline Harmon, BMT JMML
Angel Chase Edler, Organ Donor
Chase grew up in San Clemente. At the age of 20, he made the decision to commit to donate his organs should something happen to him later in life. 30 days later, Chase had a fatal skateboarding accident and was able to donate his organs to give HOPE to others in the midst of his tragedy.
Angel Christian Barker, BMT Philadelphia positive AML
Angel Connor Millard, Mitochondrial failure and HLH
Angel Dallas Hawkins, BMT Osteopetrosis
Angel Dylan Mayo, BMT AML M4
Angel Henry Tucker, BMT B-CELL ALL
Angel Isaac Lieser, Stage IV Neuroblastoma
Angel Jackson Spivey, BMT Osteopetrosis
Angel Jillian Zuelsdorff, BMT Cancer
Angel Joel Wagner, BMT LCH
Angel Katie Gerstenberger, Adrenocortical Carcinoma
Angel Kevin Warner, Epithelioid Fibrosarcoma
Angel Lily Nelson, Hypoplastic Left Heart Syndrome
Angel McKenna Johnson, BMT Lymphoma
Angel Mckenzie Bowman, BMT ALL
Angel Michael Zigas, BMT ALL
Angel Ramona, BMT HLH and her baby brother Jeremiah, diagnosed with the same
Angel Savannah Sachen, Cardiac Sarcoma
Angel Sawyer Sherwood, late diagnosis of ALD
Visit the website Sawyer's family set up to educate and raise awareness to the horrific terminal metabolic disease of Adrenoleukodystrophy and the healthy boys that are affected
Angel Summer Curry, BMT AML
Angel Sydnee, Fanconi Anemia
Angel Taylor Baum, BMT AML
Angel Taylor Vossekull, ALL
Angel Tiffany Charpenter, BMT Burkitt's Lymphoma
Angel Trevor Kott, AML, could not find donor for BMT
Angel Tucker Reamy, BMT ALD late diagnosis
Angel Tyler, BMT Dyskeratosis Congenita, and his brother Ryan Verkaik, same disease
We met the Verkaiks at the Ronald McDonald House in Minneapolis. Tyler had his BMT just weeks before Evan, and lost his fight just weeks before Evan, from complications to the same infection as Evan. Although we met in Minnesota, our falilmlies live only 40 miles from one another here in Southern California. Ryan has the same disease that leads to bone marrow failure as his brother and will have to be treated in time.
Angel's Zach and Sam Juhlmann, Mitochonrial Disease
Angel Zachary Hunter, Hystiocytosis (LCH)
Abby Ostlie, Heart Recipient
Alexandria Haddock, Acute Lymphoblastic Leukemia with 11q23 subtype
Beck Matson, Malignant brain tumor (PNET)
Cameron Perlish, BMT Fanconi Anemia
Visit Cameron's Site
underwent an umbilical cord blood transplant at the U of MN in Sept.
'07. She was there when Evan's family was. Although she was blessed to
have perfectly matched sibling cord blood to use, the vast majority of
people needing a transplant do not have a sibling match. So many lives
depend on us, YOU, registering to become donors. While Cameron is
thriving, we continue to do all we can to increase registered donors
and educate about donating cord blood. YOU could be the one to save a
Chance Simon, BMT Hurler's Disease
Chase Davis, BMT ALD late diagnosis
Cormac (Mac) Murray, MLD
Our friend Mac has MLD, metochromatic leukodystophy. His late diagnosis, combined with his disease type, has prevented any treatment, such as Bone Marrow/Stem Cell Transplant or drug therapies. His parents and brother are forced to watch Mac slowly decline, but Aimee and Brian are amazing parents who provide Mac with every opportunity to LIVE a full life, even in the midst of their agony, while hoping and praying for the CURE.
Dalton Serich, BMT Neuroblastoma/needs Kidney
We met Dalton and his family on the pediatric BMT unit at the U of M. Dalton was diagnosed and successfully treated with a BMT for his Neuroblastoma. He developed kidney failure as a result of this disease, medications, and treatment, and is awaiting a kidney. Until then, he is receiving daily diaylsis. Visit Dalton's Website
Daniel Canfield, BMT ALD early diagnosis
Daniel Kerner, Late Infantile onset of Neuronal Ceroid Lipofuscinoses (NCL), AKABatten Disease.
Dean Mangan, Kidney Recipient
Mary Mangan is a CB friend, whose husband Dean was diagnosed with a liver tumor in March of 2008. Dean received his liver in February 2009, his donor coming from a commitment to Donate Life.
Dominik Lawson, Kidney Recipient from Evan's sister Mary
We first met Dom and his family at the Ronald McDonald house in Minneapolis where both our family's lived during treatment. Our daugher, Mary, donated her kidney to Dom in May 2008 and is a vibrant little boy due to her gift of life.
Dylan Gardner, BMT ALD early diagnosis
Emerson Moengen, Tetralogy of Fallot- Pulmonary Atresia and DiGeorge Syndrome
Evanosky Family, all three children have MLD
Hollister, Mitochondrial Disease
Isabella Massa, BMT Fanconi Anemia
Ivan Ravelo, BMT Fanconi Anemia
Jack Torrey, BMT ALD late diagnosis
Jackie Kooistra, Focal Segmental Glomerulosclerosis, had kidney transplant from her Mom
Jared Kerr, BMT MLD
Jared was born on March 22, 2004, happy and healthy. On March 26, 2007, after months of doctor appointments and testing, Jared was dx with MLD (metachromatic leukodystrophy), a progressive, inherited degenerative disease. Jared's only hope for survival was to undergo a cord blood transplant to give his body the enzyme it was missing to stop the progression of the disease. He received his life saving cells on May 30, 2007. Although he did suffer disease progression, he is now stable. He is still very happy and we are so thankful to the mother who donated her baby girl's cord blood so that Jared had a chance at life.
John and Connor Chauvin, x-linked agammaglobulinemia
Jonathan Masters, BMT ALD late diagnosis
Justin Barbier, BMT Fanconi Anemia
We met Justin and his family on the Pediatric BMT floor at the U of M. While Justin was in his 20's, he had a pediatric disease and needed to be where his doctors were. Justin has had to endure several BMTs with the final one being successful.
Kennedy Heiman, Hypoplastic Left Heart Syndrome (HLHS),has a Donated Heart
Kevin Freeman, BMT Medulloblastoma
Kimberly Parowski, BMT MLD late diagnosis
Krystie Karl-Steiger, BMT Tay Sachs
Little Krystie and her dads continue to fight the good fight. A diagnosis with another dreaded metabolic genetic disease, Tay Sachs, Krystie was treated with a stem cell transplant in the spring of 2007, experiment for this disease, but without it, death was iminent. Her dads made the decision to not only try save Krystie, but to give HOPE to every child born with Tay Sachs disease.
Kyle Field, BMT MDS
We met Kyle and his parents on the BMT floor at the U of M. Kyle was diagnosed with MDS (Myelodysplastic Syndrome), considered a pre-leukemia. Bone Marrow Transplant and an unrelated donor was his only hope for beating this diagnosis. While Kyle suffered from life-threatening complications to his transplant, his family and community remained hopeful in the midst of what seemed like no hope, and Kyle is now all of our Miracle.
Lauren Nelson, BMT Hurler's Syndrome
Lauren underwent a Cord Blood Transplant at the U of MN in May of 2007 to combat Hurler's Syndrome. It is not a cure, but it does halt neurological degeneration as well as damage to most of her organs. Since the transplant, Lauren continues to amaze everyone with her spirit. She still has many orthopedic issues, some cardio & neurologic unknowns, and an uncertain future. She has only grown 2 inches in 2 years and recently started daily hormone injections. In spite of all of this, Lauren's smile lights up a room. Her preschool teacher said that she can't even remember what it was like to have a class without Lauren in it. She reminds us to take joy in everything. With every song on the radio she declares,"I wuv dat song!" and then proceeds to sing. Her favorite songs include "Your Grace is Enough" and "You Never Let Go".
To The Parents of Our Donor,
With all my heart, the first and most important thing I can say to you is Thank You.
All I know about you is that on January 16th, 2001 you gave your child's cord blood completely unselfishly to the National Cord Blood Bank. On May 18th, 2007 my daughter was given that blood for her stem cell transplant. That 20 minute infusion saved her life. Nearly a year later, she is doing amazingly. In so many ways, she is doing much better than doctors ever expected.
When my fourteen month old was diagnosed with a terminal illness called Hurler's Syndrome on December 27, 2006, I thought my world had ended. I had known that something was wrong for months, but it took so long to get to a doctor who had the experience to diagnose her... and now I was being told that her time with us would not last.
Just a few days later I found out that there was a cutting edge treatment for the syndrome available at only a few hospitals in the country...a bone marrow transplant. I knew we had no choice, and again I had some hope. A few weeks into the process of getting Lauren ready for transplant, we got a call. The National Marrow Donor Program Registry had found two 6 of 6 matches among the cord blood stored in the stem cell bank. Both were tested and the one chosen was yours.
The transplant was a tough five months for my family as I had to send Lauren's three older siblings to live with their father and move six hours away to Minneapolis, MN. The kids were 3, 5, and 9 and the only thing harder than leaving them was knowing that I might not get to bring their sister back to them. Thankfully, we were all five reunited in September.
God carried us through that time apart though and even found me a nice church home in Minneapolis during our stay. He provided shelter and food through the Ronald McDonald House. He provided expert care through the University of Minnesota Children's Hospital-Fairview. God gave us good friends, generous neighbors, and a wonderful church family to help prepare our home for our return.
But most importantly, God gave us this gift of life through you and I will never be able to thank you enough. I only wish you could read this letter. You may never know the impact of your decision, but I will tell the world.
All My Love, Prayers, and Gratitude,
Levi Stephens, BMT HLH
We met Levi and his family during our first week at the U of M. Levi had just had brain surgery to remove the fluid on his brain, a complication from his disease, hemophagocytic lymphohistiocytosis (HLH). Levi had a stem cell transplant from an unrelated donor, fought tremendous complications, and now is a vibrant, healthy toddler. Our Miracle.
Madison Bromley, BMT JMML w/ monosomy 7
Mara (Gracie) Norton, BMT MPS VI
Our girl Mara Grace is a very special girl. Diagnosed with a metabolic genetic disease called MPS VI, after years of enzyme replacement therapy with little success, her family opted to give Mara hope with a cord blood transplant. Her transplant failed, meaning her own cells won the fight, and the disease continues to ravage her body, not to mention the agony and torture she has had to endure with complications from the transplant itself.
Massimo Phillipy, BMT ALD late diagnosis
Natalie Jane, BMT Fanconi Anemia
Noah Sowder, Stage 3 Neuroblastoma and OMS
O'Toole Family, ALD, one son having BMT late diagnosis, second son also has
Owen Schauer, IPEX immune dysregulation syndrome
In early 2008 our son Owen was diagnosed with an Immune Dysregulation Syndrome, his syndrome is in the category of IPEX or Omenn Syndrome. We were told he more than likely would need a bone marrow transplant, for now that is off the table, but his future is unknown. Immediately that pushed my husband Mike and I to open our eyes to this huge need for donors. We started our Caringbridge site and then started following Evan's journey and all the amazing things the Cousineau's were doing to push for more donors. I joined the bone marrow registry online and Mike signed up at our local Relay for Life. Owen also received his first donor blood product last summer, via IVIG, this could not have been done without the selfless gift of donation. We pray that if you are looking around this web-site that you are being gently nudged to change someone's life by giving blood, signing up to be an organ donor, or joining the bone marrow registry. One selfless act could literally save someone's life.
Patrick, Chronic Renal Failure, Need KIDNEY!!
Raul (Raulito) Garcia, BMT ALD late diagnosis
Raulito has ALD like Evan did. Considered a late diagnosis, his family still made the difficult decision to try to save Raulito from this terminal diagnosis with a Bone Marrow Transplant, with his little sister as his donor. While Raulito has had difficulty with engraphment of the transplant, his disease continues to progress. His family continues to have HOPE for Raulito and provide him with a tremendous amount of love and affection back home in Scottsbluff, Nebraska.
Raegan Milan, Live Kidney Recipient plus much much more
Robert Passananti, CLL, possible BMT
Sallie Gilmer, Pre-B Acute Lymphoblastic Leukemia (ALL)
Scott Wholman, Lymphoblastic T-cell Leukemia/lymphoma, will have BMT
Taylor Carol, BMT Philadelphia Positive Leukemia
Taylor Martin, Neurofibromatosis 2 (NF2)
Teddy Perron, Mitochondrial Disease
Tommy and Kaitlyn Reis, BMT Hurler's Syndrome
Zachary Couture, BMT ALD late diagnosis
Zachary Elsenpeter, Looking for Kidney donor