Texas Transplant Family is Celebrating National Minority Donor Awareness Month

Monday, 01 August 2022 08:27

Texas Transplant Family is Celebrating National Minority Donor Awareness Month Featured

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COTA Kid Ellie Mullins Kidney Transplant Recipient COTA Kid Ellie Mullins Kidney Transplant Recipient Children's Organ Transplant Association

August 1, 2022 -- August is National Minority Donor Awareness Month, which is a collaborative initiative to save and improve the quality of life of diverse communities by creating a positive culture for organ, eye and tissue donation. This national observance was initiated in 1996 to bring heightened awareness to donation and transplantation in multicultural communities -- focusing primarily on African American, Hispanic, Asian/Pacific Islander and Native American communities.

National Minority Donor Awareness is about empowering multicultural communities to save and heal lives. Transplants can be successful regardless of the ethnicity of the donor and recipient. However, the chance of longer-term survival may be greater if the donor and recipient are closely matched in terms of their shared genetic background.

COTA Kid Ellie Mullins’ family of Lubbock, Texas, knows these facts all too well.

Abigail and Dathan Mullins do not remember the day their daughter, Ellie, was born in February 2015. But that does not matter to these adoptive parents who have loved this little bundle of joy since the day she entered their lives through the Texas foster care system. And thinking back on their blessed adoption day, Abigail and Dathan remember the tears of joy that were shed as they took Ellie Mullins to their home. However, this young couple did not know at the time their new daughter would be facing a complicated medical journey.

It was not until July 2017 when Ellie was two years old that Abigail and Dathan learned their toddler was struggling with a kidney disease called Focal Segmental Glomerulosclerosis. FSGS is a rare, life-threatening kidney condition in which the filters of the kidneys are scarred by the passing of protein in the urine. Some of the symptoms include protein in the urine, elevated levels of creatinine and swelling. In most cases the cause of FSGS cannot be determined and it typically leads to End Stage Renal Disease.

In Ellie’s case, she struggled with a great deal of swelling from water retention and complications including high blood pressure, cholesterol and extreme fatigue. Abigail and Dathan soon learned that because FSGS is quite rare in children, finding medical care for Ellie was a challenge. There were no pediatric nephrologists in the Lubbock area so they had to travel nearly five hours to get Ellie the medical expertise she desperately required.

Abigail recalls that Ellie’s first months (and years) of the FSGS diagnosis included dozens of trips to the hospital, daily visits to an outpatient infusion center, countless lab tests and eventually home care to provide daily infusions. Abigail was eventually trained to administer the four-hour infusions at home to give Ellie a better sense of normalcy with her new family. Over the course of time, several of the harsh medications the little girl was taking to slow down her immune system actually caused severe side effects. Ultimately, the infusion treatments provided little help and without any lasting period of remission, Ellie rapidly progressed to End Stage Renal Disease (ESRD).

Once a pediatric patient has been diagnosed with ESRD, there are basically two choices: dialysis or a kidney transplant. Ellie was placed on dialysis in March 2020 because several things needed to happen before the family could undertake a transplant journey with her. In addition, her medical team wanted to have some ‘wait time’ to determine if Ellie’s kidneys would stop spilling protein on their own or if they would need to be removed prior to transplant.

There was, according to Abigail, a little light in a lot of darkness when a transplant social worker at Cook Children’s Medical Center in Fort Worth talked about the journey the family was facing including potential financial considerations. The social worker encouraged Abigail to reach out to the Children’s Organ Transplant Association (COTA) to learn more about how they might be able to help ease some of the family’s stress and anxiety. Abigail placed her first call to COTA on March 23, 2020, right about the time Ellie started dialysis. One of the family’s challenges Abigail discussed on that first call was the fact the transplant center was 313 miles from their home and the family’s health insurance coverage did not have a travel benefit. She was indeed relieved to hear that COTA funds could be used for travel, lodging and food. While grateful to learn about how COTA could help, Abigail and Dathan decided to wait a few months to think more about fundraising for transplant-related expenses.

Abigail and Dathan returned the paperwork on September 28, 2020, and the Mullins family officially became part of the COTA Family.

The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime.

“Everybody at COTA is easy to talk to and so very helpful,” Abigail said. “Shortly after we signed the paperwork, we received a welcome call from COTA’s President Rick Lofgren. When Rick shared even more information about COTA, we knew this was the right decision.”

She continued, “The financial burden that all of this causes is tremendous and leads to a lot of stress. In addition to our everyday medical struggles and expenses we are also hoping to find a living donor.”

On October 23, 2020, a COTA fundraising specialist trained the family’s group of volunteers via telephone due to COVID-19 travel restrictions. The COTA staff member talked to the volunteers about COTA’s fundraising strategies (virtual and face-to-face) and shared information about fundraising templates, fundraising guidance and the no-cost website they would be provided to share information about Ellie’s transplant journey. The team got to work planning fundraisers for COTA in honor of Ellie’s Hope to help with mounting transplant-related expenses.

In November 2020, the family made the trip to Fort Worth to have Ellie’s kidneys removed, a surgical process that is called a nephrectomy. After a few weeks of painful recovery, the little girl started to feel better than she had in a very long time. Mom Abigail posted on the COTA-provided website:

November 3, 2020:    Bye Bye Kidneys! We had a long day in surgery, but everything went quite well. There was some damage to her peritoneal membrane, but her surgeon was able to stitch it up and does not think it will disrupt her normal dialysis routine. She is skipping dialysis for tonight and focusing on rest and healing.

November 18, 2020:  Recovering at Home. Ellie has been recovering at home after being in the hospital for eight days. She had a lot of initial pain and soreness during dialysis, but it has gotten better. She is acting a lot more like herself though we know she’s not 100% and probably won’t be until she gets a new kidney. She is excited about no more dialysis and eating all of her favorite foods!

November 28, 2020:  Ellie Meets the Press! Ellie had the opportunity to interview with our local news station this week. While nervous, we are glad we stepped out of our comfort zone and met with them. The interview highlighted the Giving Tuesday Campaign that COTA helped us set up and the need for community support. The response was tremendous! So many gave selflessly and generously to COTA and we also have some people interested in being tested as a living donor. It was also Ellie’s first time talking publicly about her disease. We are so proud of how far she has come and the strong girl she is becoming. (Note: The Giving Tuesday Campaign for COTA in honor of Ellie’s Hope raised more than $9,700.)

December 21, 2020:  Checking off the List! Ellie finished up several requirements for being listed for transplant. It was a very draining week, but we are glad to have the bulk of everything done now. We have an anonymous donor who is generously matching up to $10,000 in donations for COTA for Ellie’s Hope through the end of January. We appreciate all of your support and know that together we can make a life-saving difference.

January 26, 2021:     The Waiting Begins! Ellie is officially active on the waiting list for a kidney. When Ellie found out she said, “YES!! I KNEW they would put me on because I take my medicines so well.” We are all packed and ready to rush to Fort Worth when they call us for a kidney. We could not tread this journey without all of you!”

March 2, 2021:          Minor Setbacks. As we are just a phone call away from a life-saving transplant, any potential setbacks can be devastating. Ellie started showing signs of peritonitis, which is a serious infection in the membrane that surrounds her abdominal organs. We started antibiotic therapy immediately during dialysis. Samples from her dialysis fluids showed an active infection; we were crushed. You cannot receive a transplant with an active infection.

March 10, 2021:        Reflecting on a Year. We spent yesterday driving to and from Fort Worth for Ellie’s monthly clinic visit. It was exactly one year since we had set foot in the dialysis clinic at Cook Children’s and started dialysis training. Little did we realize then that her kidney transplant journey would become tangled up with a global pandemic. Because of her scare with peritonitis, she’s been inactive on the list until she is completely cleared of an infection. A bit of great news? We know she is high on the list as they have had several matches come through while she has been on hold.

May 26, 2021:            We are almost home after quite an adventure last night. We got the call for a possible kidney and zipped out the door as fast as we could. Drove through hail, lightening, rain and a dust storm with zero visibility! About halfway to Fort Worth, they called and told us the kidney was too big for Ellie so we pulled off and got a hotel for the night. Thankful our transplant coordinator advised us to bring our dialysis supplies so we were all set. We are back at the waiting game now and even more prepared for the next call.

Abigail and Dathan are grateful for the support their church family, friends, neighbors, COTA volunteers and contributors have continually provided. In May 2021, COTA notified the family to share the great news that the volunteer team had been incredibly successful in raising more than $50,000; therefore, the COTA for Ellies Hope campaign was awarded a $5,000 Challenge Grant.

More great news? On Father’s Day (June 20) 2021, Ellie received her new kidney and a second chance at life. It was, indeed, a Father’s Day the Mullins family will never forget. Nor will they ever forget the family who made the selfless decision to share their child’s organ so another child could live a healthier, and likely longer, life.

“When we joined the Children’s Organ Transplant Association (COTA), we had already been through three years of constant medical struggles with our daughter. We had little hope of ever getting past the mounting costs associated with a chronically ill child battling a rare kidney disease,” Abigail said. “Our transplant social worker recommended COTA and after our first contact, we knew it was an organization we wanted to work with. The staff’s positivity and genuine concern helped us feel at ease. They equipped our amazing volunteers to run a successful fundraising campaign, which lifted a heavy burden off our shoulders as we prepared for Ellie’s transplant. COTA continues to be a precious gift to our family.”

The family has now celebrated Ellie's first full year post transplant. According to Abigail, she has a spring in her step and a new outlook on life. She explains, “We were never fully aware of how much the gift of a kidney would impact not just Ellie's health but our entire family’s day-to-day living. We do not have hospital stays looming over us … no huge shipments of medical supplies delivered to our home … no more infusions and dialysis treatments to administer. And the daily stressors of having a chronically sick child are mostly behind us. We feel renewed; it is like having a fresh start for all of us.”

Ellie's energy level with her new kidney lets her swim all day, ride bikes, walk without pain and play soccer. Abigail says the new kidney has given the entire family their best summer ever. Even though Ellie missed the first half of the school year, she worked hard and finished first grade. Ellie is ready to start second grade in a few weeks. “We are so grateful for the family who chose to give life through organ donation. Not a day goes by where we do not reflect on the gift of a kidney and how it has given all of us new life!” Abigail said. 

“In addition, COTA continues to be a huge blessing to us by helping with high deductibles, expensive prescription medications not covered by insurance, travel and lodging costs,” Abigail said. “Inevitably, Ellie will face another kidney transplant and no young adult should have to deal with that financial burden as they enter adulthood. Knowing COTA funds are there for a lifetime of transplant-related expenses means the world to us as her parents.”

August is National Minority Donor Awareness Month. Many COTA families are waiting for their children and young adults to be matched to an organ or tissue donor. More than 100,000 people are waiting for life-saving organ transplants, and nearly 60% of the national transplant waiting list are from multicultural communities. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor. Every day 17 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives.

For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.

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