Life Beyond the Limits

Annabelle Grace, affectionately known as “AG” is a talented athlete, artist, and big sister who embodies the word “resilient” with every step she takes. This Texas-born powerhouse has been conquering stages, fields, and classrooms for as long as she can remember. Not even AG’s greatest competitor, a rare childhood cancer known as Osteosarcoma, could stand a chance against her tenacious spirit. In 2019 at the age of nine, AG began experiencing severe muscle pain in her left arm and shoulder. Naturally, she and her family thought this pain was a byproduct of her very active lifestyle. However, as months passed and the pain progressed, AG’s parents began to realize that something wasn’t right. After getting many x-rays, tests, and a biopsy done, their greatest fear was confirmed: AG had cancer. 

Following the diagnosis, AG’s mother, Leslie Bartel, learned everything she could to be the best possible advocate for AG. It was through this process that AG’s parents and medical team decided that limb salvage surgery would be the best course of action for their Osteowarrior. With the love and support of “the dream team”—Bartel’s close friends and family—AG began the chemotherapy process, hoping to shrink the size of her tumor and make her a viable candidate for limb salvage surgery. Her father, Eric Bartel, coined the phrase, “#AGTough” on Facebook. He said, “If we’re going to make it through this, everyone is going to have to be tough. We’ve got to keep her living to keep her fighting!” 

Thankfully, after lots of prayer and many rounds of chemotherapy, AG’s tumor was just small enough for her to qualify for limb salvage surgery. With the help of a donated bone graft, AG was able to overcome the osteosarcoma treatment and recovery process. Refusing to let this obstacle get in the way of doing the things she loves, AG began living a life far beyond her limits. After months of hard work, dedication, and training, AG is now participating in her local cheer team and has won several tennis matches in a non-adaptive league, using only one arm! 

AG, who is now in remission, makes a conscious effort with her family to reflect daily on the beautiful gift this donated bone graft has given her. When asked what they would say to her donor family, AG’s mother shared with tears welling in her eyes: “Thank you doesn’t seem like enough, but thank you. We truly do believe that AG has been given the miracle of life.” 

Blake Altorfer's Story

During her pregnancy with her second child, Rachel and her husband received the news that baby Blake would be born with a cleft lip and palate. A cleft palate is a condition where the cleft doesn’t fully close prior to birth, and is open on the roof of the mouth. A cleft lip occurs when the lip doesn’t completely form, and leaves an opening in the lip.

Working as a speech therapist with the Autistic community, Rachel was not as familiar with all the current treatment for cleft palates, but with her training, she was aware that if not properly repaired, Blake would have issues with eating and speaking, and could suffer from frequent ear infections.

After meeting with the cleft team at Barrow’s Neurological Institute, a plan was made. Blake’s first surgery was at four months, where his lip was repaired. His second surgery was to place ear tubes to help prevent infection, and repair the palate with a dermis graft from a tissue donor.

Rachel expressed that cleft palate’s often have a third world country image. Many US medical missions are served with the purpose to repair cleft lips and palates in these countries. However, they occur with almost the same frequency in the US, where they are very successfully repaired.

Rachel and her husband were grateful to learn that while Blake did indeed have a cleft lip and palate, it had occurred without being a part of any other syndrome, and he was a healthy baby.

Blake’s repair was a part of a study to evaluate a better outcome for speech, using a z shaped suture line as opposed to the standard straight line. “It’s almost like karma,” Rachel said, “my father passed away many years ago, and was a donor. I remember when our family received a thank you letter from a recipient.”

Just prior to Blake’s surgery, Rachel had professional family photos taken. “I knew I would miss his wide little grin” she said. “Even knowing this was best for him, my heart hurt a little that he would change”.

Indeed, Blake was a beautiful baby, both before and after his surgery, and is lucky to have two brothers to share his healthy life.

Fearless pediatric recipient beats bone cancer to save arm

In May of 2017, doctors diagnosed Dylan Vitucci with osteosarcoma, the most common type of bone cancer in children and teens. The osteosarcoma was discovered in her right humerus after Dylan suffered a fractured shoulder while playing soccer, just a few weeks before her eighth birthday. Although Dylan noticed some discomfort a couple days prior, it took a soccer ball striking her in that same shoulder to send her to the hospital. The injury quickly became a blessing in disguise for Dylan and her family as her doctors became alarmed when her range of motion didn’t return despite her fracture healing. 

A biopsy was recommended and taken from Dylan’s shoulder in hopes of identifying why her arm had decreased mobility. Doctors were not immediately certain of the specifics concerning her cancer, but they were confident Dylan had a form of sarcoma. But Dylan never seemed worried, according to her father. “I think she knew she was going to beat it,” he said. “I don’t know how, but she had something over her that made her feel completely comfortable.”

A request from her surgeons came to MTF Biologics and they contacted all 30-plus recovery partners across the United States about the urgent need for an upper humerus graft, and her best match came from another pediatric patient that had died. Dylan endured an 11-hour surgery to remove the tumor and undergo shoulder reconstruction using the donated allograft along with other prosthetics. She followed her surgery with nine months of chemotherapy, and even spent her first day of third grade in the hospital receiving treatment. But thanks to tutors and even a video-equipped robot, she never skipped a beat.

This confidence Dylan possessed allowed her to power through some difficult moments. Throughout her recovery she faced a number of complications: a blood clot on the outside of her heart, a collapsed lung and a fungus infection throughout her bloodstream. Yet she and her family continued to live by the motto, “a smile can get you through your toughest day.” And they had. Dylan, who is a triplet with another older sister, frequently exchanged laughter with her three siblings throughout the duration of her recovery. Her sister Sydney would even station herself next to her bed holding hands when that laughter seemed too hard to come by. Before long Dylan was escorted back to school in style with the help of her local fire department, and was warmly welcomed by all her teachers and classmates. 

Dylan is now cancer free and she  is beyond grateful to her donor family’s generous gift of life, and MTF’s role in transplantation. “Thank you to my donor family for their special gift that helped me get better,” she said. “I now have movement in my arm which allows me to do all the activities I could do before I had cancer. I can now play soccer and swim again. It means everything to me that you were so nice to give me the gift of donation.”  Dylan hopes her story reveals to everyone how much you can help and change someone's life through the act of donating organ and tissues.

Back on Both Feet

A Fighting Chance

Charlie Watts is a fighter at heart. In his spare time, the middle schooler loves going to karate classes, running about on the soccer field, and spending time with family. “Charlie has always been an active kid,” mom Jessica shared. On an occasion, while playing with his younger brother, Charlie accidentally crashed into a wall, resulting in a bruised shoulder, two broken toes, and unimaginable pain. 

Concerned for their son’s worsening toes, Charlie’s family rushed him to an orthopedic surgeon who assured them that their son would be fine with a corrective boot. Believing Charlie had healed, the family returned to their daily routines, unaware that their lives would soon change forever. 

“Charlie was running at soccer practice when I noticed that he was holding his arm a lot,” Jessica recalled. “He told me his arm would sometimes hurt. I knew something was wrong”. Again, Charlie was taken to a doctor to x-ray his worsening arm. After many stressful screenings and transfers, doctors at St. Jude confirmed the family’s worst fear: Charlie had Ewing’s sarcoma, an aggressive bone cancer. “It was especially traumatic for us because it was our second run-in with cancer,” Jessica explained. “Charlie had an aunt who passed away when we were young. The idea of having to go through that again was terrifying.” 

With a 70% chance of survival, doctors informed the family that Charlie would require chemo and surgery using a donated bone graft to replace parts of the cancerous arm. Though nervous about the donation, the family agreed, knowing it was the best option. “We had to trust at that point,” Jessica shared. 

Now, post-surgery, Charlie enjoys life cancer-free with two healthy arms! Thanks to the gift from his donor, he maintains his fighter spirit as a member of his school’s Varsity soccer team and continues to dream of becoming a pilot. When contemplating their donor family’s sacrifice, Charlie and his family are forever grateful for the immeasurable gift of a second chance. Using the trending hashtag, “#FightCharlieFight,” they aspire to bring awareness to children’s cancer and the importance of tissue and organ donation for individuals everywhere. 

“I can’t thank our donor family enough for what they’ve done,” Jessica stated. “Their sacrifice gave my son a fighting chance. We’re so very grateful.”

Donor Gifts Help Naomi Reclaim Her Love for Baseball

Children who are born with Down Syndrome have a much higher chance of experiencing soft tissue injuries in their lifetime. Naomi was one of those kids. Her love of baseball was threatened when she could no longer run without her knee caps displacing. Bound to a wheelchair, she no longer participated in the sport she loved. She needed to replace the ligaments in both knees and using her own tissue was not an option. The generous gifts of two donors have given Naomi a new lease on life. Now instead of watching from the sidelines as others enjoy life, she can jump, run and play.

Donated Bone Saved Chase’s Arm and His Active Childhood

Chase was diagnosed with Osteosarcoma, a bone cancer, one day after his ninth birthday. At the Nebraska Medical Center in Omaha, NE, Dr. Sean McGarry, orthopedic oncologist, discussed the options available to Chase and his family, including amputation of his arm. His family chose limb salvage using donated bone. Dr. McGarry was able to remove the tumor without damaging the growth plates in Chase's arm, then transplant donated bone and secure it with metal hardware. Immediately following his surgery, Chase could move all 5 fingers. Now he can be found playing videogames, riding his bicycle, and playing catch – all things that are done much better with his own arm rather than a prosthetic.

A Hopeful Light

Breanna Fisher has always been an energetic light. Bubbly, brave, and outgoing, the middle schooler loves turtles, playing Legos with her friends, bossing around her little brother, and swimming laps in her local pool. “She’s like any other kid,” Dad smiled, “and she’s always kept us on our toes.” However, when a small pain in her leg revealed a bigger problem, Breanna and her family worried their precious light would be dimmed.

“It started innocent enough,” Dad recalled. “Sometimes, Breanna would complain about a pain in her leg but then go right back to running around. We didn’t think it was anything serious.” One day, after complaining of immense pain and being unable to walk, Breanna was brought home, where her parents discovered a large knob on her right leg. Concerned for her health, they immediately took her to the hospital. There, doctors confirmed the family’s worst nightmare: Breanna had Ewing’s sarcoma, a rare type of cancer. Though shocking, it wouldn’t be the family’s first experience with serious illness. “My wife works for a non-profit organization that serves children with cancer,” Dad explained. “We just never thought our daughter would be one of them. We kept thinking, ‘How are we going to get through this?’”

To treat her, doctors put Breanna on chemo and recommended surgery to remove the tumor and surrounding bone. The operation would involve placing bone from a donor in her right leg. “We hadn’t heard of using donated bone before, but we were willing to try anything,” Dad remembered. “Whatever it took to save her life.”

A few months after surgery, Breanna regained mobility and her bright light. Thanks to the gift from her donor, she continues to spend time with family and friends and looks forward to returning to her favorite activities. “There are still some hurdles to climb, but she’s still with us and smiling,” Dad smiled. As registered donors, Breanna’s family does not take her donor’s sacrifice lightly. They continue to donate and share their story to raise awareness for children’s cancer and tissue donation. In gratitude, their family sent a thank you letter to their donor’s family. “Saying ‘thank you’ doesn’t begin to cover it,” Dad shared. “Without that gift, it might have been impossible for her to move her leg again. Now, she has a chance to get back to her old life, and it’s put a light back in her eyes. Thank you for giving us hope.”

Katie Coolican

Kathleen Bridgett Coolican, the youngest of six children, was a freckle-faced, curly haired tomboy. Katie dreamt of being a mud wrestler. She was a happy little girl, smiled often and had a “what’s next life” kind of attitude, according to her mother, Maggie. She loved to fish, and often put her bathing suit on backward.

Six-year-old Katie was a first grade student when she collapsed on the playground from an arteriovenous (AV) malformation and became the family’s first organ and tissue donor. “Katie’s death in a small New England town impacted many,” said Maggie. “We quickly understood that her death was not something we would ever get over, but would learn to live with. Friends, neighbors and strangers provided daily support and dedicated a playground in her memory in 1984.” Her graduating classmates remembered Katie and dedicated a page in their senior yearbook. Katie’s donation educated many children and adults and continues to help her family. She is featured in a children’s coloring book about donation, Precious Gifts.

“Much has changed since Katie became a donor. At that time we received one letter about her gifts and then were left to grieve alone. There were no books or pamphlets about donation or grief. There were no support groups or cards remembering her birthday. There were no quilts or special memorial services or floats to remember Katie and other donors and their families,” observed Maggie.

In 1985, Maggie began to speak out about this lack of care and support that she felt as a nurse and a mother. She wrote an article that appeared in the American Journal of Nursing that became “Katie’s Legacy” and led to many speaking engagements throughout the country as she advocated for improved care and follow-up for donor families.

By 1989, Maggie had written a family donor booklet, For Those Who Give and Grieve, as her graduate thesis, and the booklet was published and distributed to more than 125,000 people. The response to the booklet led to the publication of the For Those Who Give and Grieve quarterly newsletter with Maggie as the founding editor. In 1992, the National Donor Family Council housed at the National Kidney Foundation was formed. The Council, with Maggie as the founding chair, published the Donor Family Bill of Rights, National Communication Guidelines and several other resources for donor families. Maggie also created the National Donor Family Quilt and sewed the first 25 panels with a total of 1,750 “Patches of Love.” Katie’s patch went on the final panel.

During this time, Maggie also worked with Hartford Hospital to create a two-year follow-up bereavement program for families that has been replicated around the country. She has participated on several national boards and committees, including UNOS, AMA Organ Task Force, Advisory Board on Organ Transplantation, AOPO Donor Family Council and was a founding member of Donate Life Connecticut.

In 1991, she began working at the organ recovery organization in her home state, now LifeChoice Donor Services, and later at the Musculoskeletal Transplant Foundation (now MTF Biologics), until her retirement. 

Amalya Conkel

It’s hard to put into words what donation has meant for our family. It brought so much joy, excitement, comfort, peace, and allowed for accelerated healing. I did not get very many opportunities to parent my son during his brief life, but because of donation, I have been able to parent his memory and help create a lasting legacy for him. I love knowing that my son’s gifts have had a profound impact on medical research, and allowed for new discoveries to be made.  I am so very proud to be called a donor mother, and I am forever grateful that the Lord allowed donation to be part of our story! 

- Bethany

Watch Amalya's Video Story

Joey Savage

As much as my heart was shattered into a million pieces and my mind was full of so many emotions after Joey was pronounced brain dead at the age of 25 from injuries he sustained from a car accident, the pieces began to be filled with, my son’s selfless devotion, true to who he was, to give his last gifts to this world – a second chance at life to someone in need. Bringing full circle the struggle of hope in the face of hopelessness and helplessness – he was already a true angel to so many. 

At the age of 17, it was Joey’s decision to become an organ and tissue donor when he received his driver’s license. At that moment I don’t think I could have been any more, proud of him for his mind at 17 to even think about helping others by giving them his gifts to complete strangers, so they can continue living. 

I was diagnosed with a blood and bone cancer in June, 2018 which led to me needing major spine surgery in 2019. Joey, had 3 pieces of bone left in the bone bank, 2 of which were a perfect match. I truly believe that, Joey, knew I would need him to save my quality of life and it was his way of saying “keep going mom, I got your back, you got this”. I had Joey’s back for 25 years and now he has mine. I know he is rallying around me, so I will never be alone and has saved me in more ways than one. Joey, is a true hero to so many, but now he is my hero in every sense of the word. He is the whispering strength behind me pushing me each day to live life to the fullest. 

I am committed to do whatever I can to promote organ and tissue donation all because of a 17-year-old boy, who never thought twice about giving his precious gifts to someone in need. I have found peace and comfort in knowing my son’s legacy and memory will be remembered through organ and tissue donation. To us, Joey, will forever be our “angel of life” in more ways than anyone could ever know.  

Joey, is and will always be my greatest accomplishment and my entire world. He will always be in my heart, back and never leave my mind.

- Heather Prutzman, Mother

Akintunde Oladele

Akintunde Oladele was born at Crawford Long Hospital in Atlanta on Thursday, October 8, 1992. The high temperature that day was 63°F. A cooler than average summer had just drawn to a close and the city found itself sliding into what would turn out to be a cooler than average autumn.

All of this belied entirely the arrival of the heated little firebrand who had just entered into the world. If you seek to understand who he is there are four salient points that feature prominently. In no particular order: he was incredibly passionate; he loved giving gifts; he loved stories (be they told as books or games or in the form of high fantasy); and he insisted strongly upon living life in the presence of other people. From his earliest moments these characteristics were already quite firmly established. You may take it on good authority that they did not in any way diminish. Not from his first day and not to his last.

His home life was spent entirely at various addresses in Dekalb County, always in that general expanse roughly between Decatur and Stone Mountain (except for that time spent at what he soon came to regard as his second home, at Morehouse College). We have every indication that this general area is where he intended to make his home forever, for he spoke frequently of the fact that although he could make it in any city in the world, he desired strongly to stay in the Atlanta area and to cultivate not only himself but the community around him.

But make no mistake; his horizons were not narrow. His earliest education was had at Atlanta International School. He quickly established himself as an outgoing person, and he made friends from all over the world. This trend continued into the public school system, from Brockett Elementary, to Tucker and Henderson Middle, to Lakeside High School and on to college.

He was not content merely to consume things and ideas and experiences, but also to make them. Akin was always on the very cutting edge of experience, always abreast of the latest fad. While this made him too easily prone to set something down almost as quickly as he had picked it up, it also ensured that he would excel at computer science, for you could be sure that his knowledge was always freshly acquired, incredibly up to date, and that it would be applied vigorously. (It also ensured that he was never boring. For more on this, ask those who partied with him! Or those who shared his taste for "nerd" culture.)

With this knowledge and this energy he wanted to contribute to science and to the greater well being of the world, not only to advance the field of computer science but especially to make sure that the downtrodden were not left behind, that the gains of the new world he was helping to build would be shared in abundance. In his last days his mind was teeming with great plans aimed at finding ways to achieve this, both in terms of what he might give to his family – who he loved– as well as to the community.

It may not be entirely accurate to speak of "his last days," however. As long as something of a person's deeds and works touch someone positively, that person is still, in a very real sense, part of an ongoing story. Given the sheer number of people Akin, in his boundless zeal, made sure to interact with and with his final legacy of tissue donation, we can be quite certain that his story in particular will echo through into eternity.   

- The Oladele Family

David D'Agostino

David A. D’Agostino, a biology major from the University of Scranton class of 1981 shared a passion for medicine and Science. After learning about the advances in tissue transplantation, David got directly involved in the early development of tissue banking in his local community. In life he shared his friendship, talent, compassion, and love with everyone he met. The selfless act of donation continues to give love to others. He died in an accident in 1982 and became Pennsylvania’s first tissue donor. His giving nature and kind spirit continues to nourish his family, his donor families, and the lives of others.

- The D'Agostino Family

Isaiah Toole

Isaiah was and continues to be our prince. The only boy among three girls, he provided boundless energy and light to our entire family. On November 1, 2013, when that light was dimmed, our gift became a gift for others. May Isaiah's life, legacy, and gifts through tissue donation, continue to enrich the lives of others. It is our honor on his behalf to share his hero's journey with others in the hopes that others will say yes to organ and tissue donation. 

- Yolanda Toole, Mother

Matthew Lee Pettegrew

My son Matthew is my hero, always a giving, loving person. His legacy continues to live through his Tissue Donation. 

- Melissa Torres, Mother

Jeffrey J. Pomykala

Jeffrey was an awesome guy! He was the kind of person that would talk to anyone! Always making us laugh with his impersonations…and always the glue that held us together. We all miss talking to him as he always had an ear for listening and giving sound advice. Rest easy brother. Not a day goes by that you’re not thought of.

- Angie Dianese, Sister

Leaving a Heroic Legacy of Life

Sally is the proud mother of four amazing children. She and her first-born son, Jonathan, were inseparable. One day, Jonathan’s friend knocked frantically on their door to get her contact information for the hospital. Jonathan and his friends went swimming at a quarry, and he was trapped underwater for over forty-five minutes. Tragically, Jonathan died before Sally made it to the hospital. She and her family were devastated.

It was then that Sally remembered that both she and her Jonathan signed up as organ donors when he first got his license. “He was just that kind of kid. So cool, and so generous. I remember how he said to me, ‘Mom, I’m an organ donor just like you”. She told the coroner that Jonathan was on the donor registry. Sally spoke with a compassionate staff member at the Gift of Life Donor Program, which facilitated Jonathan’s donation. As part of their bereavement care program, the Gift of Life Donor Program sent Sally a package filled with items to help cope with their loss - resources on grief, Donate Life pins, a certificate, and bracelets. Her family especially loved the bracelets because green was Jonathan’s favorite color.

Sally was so proud of Jonathan’s heroic decision that she began using her place of business, a coffee shop, to spread awareness about organ and tissue donation.  Ironically, the coffee shop was around the corner from MTF Biologics, a place where staff employees would stop by for coffee on their way to work. When MTF Biologics staff learned about Sally’s connection to donation, they invited her to visit the facility. It was then that Sally learned Jonathan’s gifts were sent to MTF Biologics to prepare his tissue for transplant. She was delighted that his bone and skin grafts helped 25 people across the country. Additionally, his corneas gave sight to two individuals, and his heart valves helped eased someone’s cardiac condition.

“Imagine that. Two people can now see because of Jon. Someone can walk again; do things they couldn’t do before. It gave us life to know that he helped so many people. While Jon is no longer physically with us, his legacy and spirit live on in those individuals he has helped. That was John—my brave hero.”

Michael Budzinski

Mikey was a gentle giant to all who knew him. His wonderful laugh and beautiful mind gone too early. Missed and loved everyday. We find comfort in knowing the gift of his donation has helped so many in their healing. May God bless them on their journey.

- Kim Budzinski, Mother

John Boswell

In December of 2017 I lost my husband to a heart attack. He had been sick for a while and was awaiting a heart transplant himself. At only 30 years old, it was the most alone I had ever felt. Tackling single parenting of our two small children and picking up the pieces of what was once our life was a daunting task. Now, when I think back to those early days, I remember clutching at anything that could provide some semblance of comfort. To this day I am relieved that by choosing to Donate Life, I continue to feel just that – comfort. This affects not only me, but also my children, now 11 and 7 years old and still constantly in awe of their father’s selfless last act.

We were well-aware of the sacrifice that would need to happen to allow John to continue on and watch our children grow up. Instead, he became the reason that someone else lives a life pain-free. While this was not our intended plan, we do find beauty in it. My son often talks about how he hopes to someday meet a recipient family, just to continue to feel that his dad truly is all around us. 

I wear my green bracelet daily. Working in healthcare, I do often field questions about it. Why Donate Life? While my goal is to raise awareness of donation, it also really helps to keep me connected to John in some small way. It makes me feel that his presence is still around me, continuing to pay homage to him daily, which is all I can ask for. Our mantra as a family has always been “moving forward, never on” and by wearing our bracelets and continuing to keep John’s memory alive, we continue to do just that.

- Nancy Boswell, Wife

Nicholas Miller

Nicholas Miller was 14 months old when he received a heart transplant. His female donor was the same age. They both had chocolate brown eyes and curly hair. Nicholas was a happy little boy who loved balloons and Mickey Mouse and music and swimming. Four months after his transplant he died suddenly and his parents chose donation.  

- Jayne & Tom Miller, Parents