Celebrating World Down Syndrome Day
POV: DNA employee and mother of a child with Down syndrome
Please join my family along with other families around the globe on March 21 to embrace diversity, inclusion, and the unique contributions of every individual born with Down syndrome.
- Down syndrome is a genetic disorder caused by the presence of an extra 21st chromosome, which affects the development of the body and brain and leads to intellectual disabilities, distinctive facial features, and various health issues.
- The significance behind the date, March 21, signifies the uniqueness of the triplication of the 21st chromosome which causes this syndrome.
our story
Meet MIKEY! The boy who stole my heart and forever changed my mind.
It was Mother’s Day, May 14, 2006, the most exciting moment of my life! My water broke early that morning, and I quickly realized it was GO TIME! I was about to give birth to the healthy baby boy I had been anticipating for nine months. It was finally time to hold him in my arms, hug him and kiss his tiny face!
We arrived at the hospital and began to prep for a C-section. Everything by that point was magical and exciting. The surgery went great, and I was on my way to recovery.
Shortly afterward, while in recovery, I was informed that my beautiful baby boy had Down syndrome. Everything changed in that moment as time stood still. I tried to process the unexpected news that my baby was going to be developmentally disabled, with other potentially fatal health concerns, according to the doctor. My mind immediately went to a very dark place of pure devastation, fear and hopelessness. I had very little confidence in my ability to handle such scary news about my baby. However, what they did not tell me was that Down syndrome, despite its challenges, also brings unique strengths and blessings.
What I later learned about parenting someone with Down syndrome
- Unconditional Love: Individuals with Down syndrome often exhibit remarkable empathy, warmth and affection, fostering strong connections with family and friends.
- Joyful Disposition: Many people with Down syndrome have infectious positivity and an innate ability to find joy in simple moments, enriching the lives of those around them.
- Resilience: Despite facing obstacles, individuals with Down syndrome demonstrate resilience and determination, inspiring others with their perseverance.
- Inclusivity: The presence of individuals with Down syndrome promotes inclusivity and diversity, fostering a more compassionate and accepting society.
- Unique Abilities: People with Down syndrome often possess unique talents and skills, contributing to various fields such as art, music, sports and advocacy.
Fast forward to 17 years later, I am beyond grateful I was chosen to be his mommy! I was chosen to fight for him, to provide unwavering support, advocacy and care for him. Mikey is my reason, my purpose.
I will forever embrace his unique strengths and advocate for his human rights as we navigate the complexities of his disability together.
One final detail: according to both the publication American Family Physician, and the nonprofit Down Syndrome International, adults with Down syndrome are competent to make medical decisions for themselves.
In the spirit of unconditional love, joy, resilience, inclusion and uniqueness, we invite everyone, including those with Down syndrome, to consider registering as organ and tissue donors to offer the gift of life. Have this conversation with family and friends, and visit www.DonateLifeAZ.org. There are no age limits or health requirements to register to save and heal lives.
Sharing hope with a smile
Comedian Jazrome Allen “AJ” Coulter began his comedic journey through an unconventional path. In 2016, doctors diagnosed Coulter with focal segmental glomerulosclerosis (FSGS). A year later, he transitioned to a demanding life on dialysis, enduring five and half seemingly endless years.
“The anticipation of a kidney transplant felt like an excruciating eternity,” Coulter says. But that call eventually came, which propelled him into a whirlwind of surgery and recovery.
“The medical team’s excellence was undeniable,” he says, “yet the true heroes were Tab and Catherine Pierce, who selflessly stepped in as my caregivers, showcasing the beauty of love from strangers.”
He is not only thriving but assured by his doctor that his new kidney is here to stay. He even started the process of writing to his donor’s family to thank them for their courageous decision.
Coulter now makes it his mission to share the love and hope his transplant has given him with the world, making people laugh while doing it.
you can help share hope
You can help provide hope to the 103,000 people on the national organ waiting list. Register as an organ and tissue donor today at www.DonateLifeAZ.org.
A second second-chance
“I never had a solid diagnosis as to why my kidneys failed at the age of 26,” Linda Robinson says, though it didn’t entirely matter why she had kidney issues for 14 years. It came down to needing a transplant to stay alive.
Robinson’s father stepped up to the plate as a living donor, and she underwent a transplant surgery. Almost three decades later, a bout with COVID-19 damaged that same gifted kidney and put her on the waiting list again.
“I have been on hemodialysis since June 2022 and have had to put most of our travel plans and activities on hold,” Robinson says. “I do hemodialysis three days a week, three and a half hours a day. This is my life now.”
She hopes another donor will come through.
“When that happens, we will be able to travel to visit my elderly parents, our son, his wife and our three granddaughters.”
you can help
You can help provide hope to people like Linda. Registering to be a donor can help so many people who are awaiting a transplant, and lives are changed every day thanks to those who have registered.
Register today at www.DonateLifeAZ.org.
How the national organ transplant list works
Every nine minutes, someone is added to the national organ waiting list. Through the generosity of 19,217 organ donors, there were 38,761 transplants between January and November of 2023.
IN A NUTSHELL
In the past, donor organs were matched first with local candidates, then regional, then national. As organ preservation technology has improved, it has become possible to transport organs across longer distances, making geography less important in this lifesaving equation. Organs are matched with candidates based on many factors, including blood type, body size, degree of illness in the candidate and the candidate’s distance from the donor hospital.
Patients needing an organ transplant are evaluated by a transplant center for suitability. If the transplant center accepts a patient as a transplant candidate, their clinical information goes into the Organ Procurement and Transplantation Network (OPTN) database.
When a donor becomes available, Donor Network of Arizona (DNA) staff enter the donor information into the United Network for Organ Sharing (UNOS) computer system, and that system compares donor characteristics to the database of waiting transplant candidates. The system then generates a unique list of potential candidates based upon these factors. The DNA coordinator then notifies the transplant centers when their candidates are eligible to receive an organ based on the available donations.
UPHOLDING HOPE
Every registered donor offers hope to those on the waiting list, and DNA remains committed to saving lives. By advocating for more people to register as donors, we aim to create a community where organ transplants are embraced, and donors are celebrated as heroes. Through education, we strive to increase organ and tissue donor registrations, which helps save and heal more lives and get people off the waiting list.
HOW YOU CAN HELP
The main way to shorten the waiting list is to increase donor registrations. You can help by making the decision to register as an organ donor today. This decision has the potential to save eight and heal up to 75 more lives!
Register today at www.DonateLifeAZ.org.
The season of generosity
‘Tis the season of giving during which the warmth of kindness and the spirit of generosity fill the air!
As we immerse ourselves in festivities, it’s important to reflect on the true essence of the holiday season. Sometimes, the greatest gift does not come with a bow. Instead, it is the choice to give the gift of life. Anthony Phillips and the Lopez sisters are fantastic examples of how the choice to share life can impact a person and their families.
Choosing to give
Anthony Phillips loved to laugh and smile. “He was a jokester,” says Vivian Phillips, his sister. His smile was as big as his love for cars.
For more than 20 years, Anthony owned a car detail shop. “He was the absolute best at it,” Vivian says. In his free time, Anthony loved to spend time in the kitchen and whip up new recipes.
In March 2022, Anthony passed away from complications from a brain surgery. The Phillips family had no idea about Anthony’s status as a registered organ and tissue donor.
“We found out within the last week of his life,” says Vivian.
Collectively, they were in full support of his decision to donate life. He offered healing to dozens of people, including through the gift of his heart valves, which go to pediatric patients 75% of the time to save their lives, often from congenital heart defects. And today, the Phillips family continues to remember Anthony’s legacy and encourage others to register as donors, too.
“We tell his story to bring light to the subject,” Vivian says.
abnormal Hearts
Adolfo Lopez, a heart recipient, and his wife faced a painful reality when they discovered that both their daughters, Adina and Andrea Lopez, 11 and 12, needed heart transplants due to cardiomyopathy.
The excruciating wait for available hearts was compounded by the fact that thousands of children across the nation are in need of transplants.
Adolfo grappled with anxiety surrounding the availability of donated hearts and which of the sisters would get it first, if at all.
In early 2023, after several months of waiting, Andrea and Adina received their transplants about a month apart—gifts from families battling their own grief. Both sisters conquered their surgeries and were eager to return to their passions for dance, volleyball and other hobbies.
“Heart disease, scars and sickness will never stop your legacy. We have been given the most amazing gift, the gift of life,” Adolfo says. “[My daughters] make me proud in everything they do.”
REGISTER NOW
This holiday season, let us come together to unwrap the true spirit of generosity. Registering as an organ donor is a gift that costs nothing but has the power to transform lives. It is a gesture that goes beyond the season and embraces the impact one can have on another’s life.
Donation and Indigenous Communities
CELEBRATING NATIVE AMERICAN HERITAGE MONTH
Native American Heritage Month, recognized every November, is a time dedicated to honoring and celebrating the rich and diverse cultures, traditions, and contributions of Native Americans. It serves as an opportunity to increase awareness about the histories, struggles, and triumphs of Indigenous peoples, both past and present.
Why is it important for us to celebrate Native American Heritage Month? It brings visibility and education to understand the diverse Native American communities across the nation. In Arizona alone, there are 22 federally recognized Native tribes.
Ultimately, Native American Heritage Month invites us all to learn, appreciate and honor Native American cultures while promoting meaningful dialogue and respect between Indigenous and non-indigenous communities.
DONATION AND TRANSPLANTATION ACROSS COMMUNITIES
In Arizona, there are 120 Native American/Alaska Native patients on the waiting list for a life–saving transplant. Nine of 10 Native Americans on the waiting list are currently waiting for a kidney.
Donation and transplantation can be successful regardless of the ethnicity of the donor and recipient. However, the chance of longer-term success and health may be greater if the donor and recipient are closely matched in terms of their shared genetic background, for most organs.
"I KNOW MY SON'S IN THERE..."
Seventeen years ago, Rosina French, received the phone call no parent wants. Her son Trent had been involved in an ATV accident and was ultimately declared brain dead. At just 24 years old, he gave the gift of life through organ donation.
Rosina wrote to his recipients and heard back from several. Trent’s kidney and liver recipient, Ray, is a Navajo rancher in New Mexico. After being on the waiting list for nine years, Ray got the call for his second chance through Trent’s gifts. Rosina, Ray and ray’s wife, Rita, have visited each other many times and built a friendship.
“We’ve become rather close,” says Rosina. “I just love him dearly and try to keep in contact with them as much as possible. We always end our phone calls with ‘I love you.’ He tells me he has cravings for coffee and pizza now and he never had that problem before, so I know my son’s in there.”
YOU CAN HELP
Let’s create a more inclusive transplant community for all. Together, we can save and improve the quality of life in Indigenous communities.
How? Join the DonateLifeAZ Registry when you apply for or renew a driver’s license or state ID at an ADOT MVD office. You can also register online now at DonateLifeAZ.org.
The gift of donation
Almost 104,000 people in the United States need an organ transplant. * Nearly 2,000 of them live in Arizona. * The numbers are staggering, yet there is plenty of hope to work to save their lives.
Just one organ and tissue donor can make a profound impact on these numbers through their choice to share life. Donated organs restore health and extend life for those whose own organs are failing. Tissue donors help by restoring sight, preventing limb amputation, healing burn victims, repairing bone, tendon and ligament damage after trauma and much more.
THE POWER TO HEAL
Each organ donor has the potential to restore health and extend the lives of eight people! You may choose to donate the following organs:
- Heart
- Lungs
- Liver
- Pancreas
- Kidneys
- Intestines
Tissue donation is just as impactful. One tissue donor can restore 75 lives, and each year more than 1 million people in the United States are touched by these gifts. From heart valves that repair congenital heart defects, to ligaments that restore mobility, and eyes that give the gift of sight, tissue and ocular donation offers hope and healing for many.
THE NEED
While organ and tissue transplant surgeries are now standard and highly successful procedures, the need for such gifts is still great. Every nine minutes, someone gets added to the national organ waiting list. Thousands wait to receive lifesaving organ transplants and life-healing tissue transplants in Arizona and across the nation.
HOW?
When an individual passes away in an Arizona hospital, regulations require someone from the hospital to contact Donor Network of Arizona (DNA) to report that death. Someone at DNA then has the chance to check whether the patient was a registered organ and tissue donor through the DonateLifeAZ Registry.
If the patient had made the choice during his or her lifetime to register as an organ and tissue donor, our team counsels and supports the donor’s family as we honor the donor’s decision to share life. If the patient has not made a decision, the patient’s family is invited to make the decision about donation on their loved one’s behalf.
After the patient, or his or her family, makes the decision to give the gift of life, our clinical staff consults with the United Network for Organ Sharing (UNOS) and transplant hospitals to find matches on the national organ waiting list. When matches are found, organs are allocated based on many factors, including medical urgency and distance, so that those who are in the most need are able to receive a lifesaving transplant from the generous donor.
WHAT YOU CAN DO
The decision to register as an organ and tissue donor is to make the choice to share life. The DNA team works closely with Arizona hospitals to make the most of these gifts, saving and healing lives throughout Arizona and across the United States. You too can save and heal lives when you apply for or renew a driver’s license or state ID at an ADOT MVD or select authorized third-part offices. You can also register online right now at DonateLifeAZ.org.
*Data as of Oct. 31, 2023
Upgrading imperfect lungs: Healthy Lung Month
Lungs: Vital to life
Unhealthy or damaged lungs can make it difficult for the body to get the oxygen it needs to survive. Lung disease takes 15,000 lives each year. Transplanted lungs provide people suffering from cystic fibrosis, emphysema and pulmonary embolism with new life and the chance to breathe deeply again—often it’s the only option left.
During Healthy Lung Month, each October, we shed light on lung transplants, groundbreaking technology and share the stories of our many transplant warriors.
Upgrading Imperfect lungs
Lung transplants serve as the only medical intervention for people with end-stage lung disease. The demand for lung transplants exceeds the number of donated ones and because of issues discovered after recovery from donors, only 20% of available donor lungs are transplanted.
Lung Bioengineering, a biotech company focused on increasing successful lung transplants, estimates that 40% of unutilized lungs could still save lives.
Lung Bioengineering introduced a technology called ex-vivo lung perfusion (EVLP). This new technology mimics the lungs’ normal function. This allows medical professionals to improve lung function outside of the body. Prior to EVLP technology, the acceptable perseveration time of lungs was six hours through standard practice. With the help of EVLP, the preservation time extends to 16 hours!
A breath of new life
Omar Hashem, a lover of photography, steps into focus to share why he is still here today. A double lung transplant saved his life.
Photography, an art form revered worldwide, was a difficult path for him. He grew up in Saudi Arabia when movie theaters were forbidden. Omar’s parents were not immediately supportive of his curiosity about film. Then, he got a lung disease diagnosis and was transplanted. After surviving post-transplant cancer, he required a second double-lung transplant.
Omar, despite the hardships, never lost sight of his goals. He now has a bachelor’s degree in film and media from Arizona State University, a master’s degree, and plans to pursue a PhD.
“I’m so thankful to the person who gave me their lungs,” Omar says. “I pray for them every day, and I always mention them whenever I achieve something in my life.”
Sign up. Save Lives.
There are thousands of stories like Omar’s that showcase the gift of organ donation. Every 9 minutes, someone is added to the transplant waiting list. In Arizona alone, approximately 2,000 people are waiting for an organ transplant. You can make a difference by registering as an organ and tissue donor. This generous act is a choice—a choice to save lives.
There are no age limits or health requirements for hope and generosity. Anyone can register! Join the DonateLifeAZ Registry when you apply for or renew a driver’s license or state ID at an ADOT MVD office or select third-party offices. You can also register online today at DonateLifeAZ.org.
Breast Reconstruction Awareness (BRA) Day
Grateful For Generosity
It was just a normal Friday afternoon as Mary Louis was wrapping up her day as a teacher when she received the news. A text from her physician said, “The results from your biopsy are back and we are 80% sure that it is cancer.”
She was in disbelief as she had always been in good health, and cancer has never been seen in the family. Louis quickly found out that she had triple negative breast cancer, which is the most aggressive type of breast cancer. It affects mostly young, pre-menopausal women of color. After months and months of treatments she received donated skin grafts.
“I am truly grateful for the life that I have now, but all this would not be possible if not for [such a] generous and thoughtful gift,” Louis says.
What is Breast Reconstruction Awareness (BRA) Day?
During Breast Cancer Awareness Month, we recognize a day known as BRA Day, which fell on Oct. 11 this year. BRA Day’s goal is to educate, engage and empower women, and men, who have been diagnosed with breast cancer. It is dedicated to raising awareness regarding breast reconstruction options available post-mastectomy.
Donor Network of Arizona (DNA) celebrated BRA Day by hosting an event where Mary Louis shared her story and information with staff. We observe BRA Day to embrace all aspects that contribute to making breast reconstruction possible for cancer survivors and to educate anyone unaware of their reconstructive options. We also recognize the roles that DNA and tissue donors play in helping breast cancer survivors get back to normal and healthy life, both physically and mentally.
At DNA we organize such events to ensure that individuals of all ages, both women and men, are educated about breast cancer and are aware of what to watch for during a self-examination. Following the presentation, the afternoon carried on with various activities, including crafting cards for cancer patients, signing pink ribbons to honor loved ones and a photobooth.
Give hope
You have the potential to give hope and healing to breast cancer survivors. To register as an organ and tissue donor, visit DonateLifeAZ.org.
Celebrating Latino Heritage Month
Syrena Arevalo-Trujillo was diagnosed with pulmonary hypertension in 2012 and needed a lifesaving double-lung transplant. She could barely walk to her front door. Now she says she feels like she could walk up A-Mountain in Tempe post-transplant.
More on her story below, but why does it matter? Latinos both save lives and are on the waiting list for someone to bless them with such a gift.
WHAT IT'S ALL ABOUT
From Sept. 15 to Oct. 15, we recognize Latino Americans like Syrena and celebrate the histories, cultures, and contributions of American citizens whose ancestors came from Spain, Mexico, the Caribbean and Central and South America. Sept. 15 also coincides with the national independence of El Salvador, Guatemala, Costa Rica and Nicaragua. Mexico, Chile and Belize also observe independence days during this period.
A SECOND FIRST BREATH
Four years after her diagnosis, Arevalo-Trujillo received the gift of life.
“It’s just the feeling of gratitude,” says Arevalo-Trujillo. “I am alive because of the selfless act of a stranger. Someone that I have thought about every day since. I would be lying to you if I said it has been an easy journey, but it has been well worth it.”
She hopes to one day meet the family of the donor who gave her a second first breath of life.
GENEROSITY ACROSS COMMUNITIES
DNA and the donation and transplantation community celebrates the generosity of Latino donors and their families for their ultimate gift.
In 2022, there were 99 Latino donors, and 393 Latino lives were saved through transplantation. During the month-long celebration, events around the state and nationwide are held to celebrate Latino Americans and their contributions on arts, literature and history.
JOIN IN ON THE IMPACT
In the spirit on Latino Heritage Month, we invite you to take a moment to consider the impact of organ donation within the Latino community and how you can become part of this life–saving legacy.
Join the DonateLifeAZ Registry when you apply for or renew a driver’s license or state ID at an ADOT MVD or authorized third party office. You can also register online today at DonateLifeAZ.org.
También se puede registrar utilizando nuestra página de internet completamente en español. Regístrate aquí en DoneVidaAZ.org.