A Selfless Co-Worker, A Mom Who Won’t Give Up, and the Power of Altruistic Donation

With a little help from our  team, Help Hope Live clients are popping up in headlines every month. Check out three standout stories from spring 2017.


Freddie Hale: Co-Worker Gives the Ultimate Gift


Fighting diabetes, Freddie Hale is undergoing dialysis three days per week for four hours per day – yet he’s still working diligently at Lowe’s in his hometown of Nampa, Idaho. The close bond between Freddie, his co-workers, and the Lowe’s management team lead to an incredible next step: one of his co-workers offered to be a living kidney donor to save Freddie’s life.

Freddie Hale Help Hope LiveTia plans to donate a kidney to her co-worker, Freddie

“I get to help him live,” said his future donor Tia Hess in an article for the Idaho Press-Tribune. “If you can help someone, why not?” Freddie sang her praises, saying, “She’s so giving. I could never repay something like this.” He is waiting for the lifesaving transplant to plan a wedding ceremony with his fiancée, Christa, who calls Tia “my personal hero.” Freddie fundraises for the Northwest Kidney Transplant Fund (when he’s not belting out Billy Joel covers in his garage, that is).

(‘Because it’s Freddie: Co-worker to donate kidney as living donor this summer)


Ilysa Winick: Coast to Coast Support for an Amputee Mom


“This mom of two could be you,” Denise Albert wrote for Good Housekeeping. She is profiling New York resident Ilysa Winick, an active mom, wife, and nursery school owner, who contracted a near-fatal blood infection in June 2016. The infection caused her body to go into septic shock, shutting down her vital organs. She woke up in the hospital a month after she went in. Both of her feet had to be amputated below the knee as did her hands below her elbows.

Ilysa Winick Help Hope Live

Ilysa with her husband and two sons

To complicate matters further, the infection resulted in end-stage renal disease and Ilysa now needs a kidney transplant. “Her two boys need their mom,” wrote Albert. “Her husband needs his wife.” This video shows Ilysa walking with new prosthetics:

Ilysa’s cousin Chrissy, who lives across the country from Ilysa in Florida, organized a CycleBar fundraiser in May to rally her local community to support the New York Catastrophic Illness Fund in honor of Ilysa. “It can happen to anybody,” said Chrissy.Chrissy proved that your Help Hope Live fundraising potential doesn’t have to stop at state lines.

(This Mom, a Recent Quadruple Amputee, Is Now Fighting to Survive)


Mary Kriete: Inspired by Altruism on the Waiting List


Mary Kriete has been on the kidney transplant waiting list for nearly three years. While she waits, she must pursue dialysis for an hour per session four times per day. Her kidneys have just 8% functionality, down from 20% when she started dialysis.

Mary Kriete Help Hope Live

A selfless choice could help Mary get the gift of life

Mary can no longer work, live an active lifestyle, or even keep pets until she gets a transplant. Eight or nine people have offered to become living donors for Mary, but none passed the required medical clearances. In the meantime, she fundraises with Help Hope Live with creative community events like Dine and Donate percentage of sales nights, high teas, silent auctions, and by requesting donations in lieu of birthday gifts. Donations are collected in her honor via the Midwest/West Kidney Transplant Fund.

An article from The Missourian puts Mary’s story alongside an incredible tale of hope. Dr. Jackie Miller had planned to be an altruistic donor for decades. In August 2016, with the support of family, friends, and her faith, she donated her kidney to a stranger. Dr. Miller hopes her altruistic choice will help others to make the decision to be living donors to help people on the transplant waiting list like Mary.

(‘It Was a Beautiful Journey’)


Get your Help Hope Live fundraising story in local headlines! Contact your Fundraising Coordinator today and let us help you with press outreach.

Living with Quadriplegia, “Anything is Possible”

In August 2014, Elizabeth “EB” Forst, a doctor of physical therapy, was working as a travel orthopedic physical therapist when she sustained a C4-5 spinal cord injury in a diving accident, leaving her completely paralyzed from the neck down with little to no movement or sensation.

Prior to her injury, she was independent, active, and adventurous. She had competed in six triathlons, traveled extensively all over the world, was an active and advanced scuba diver, loved live music, practiced daily yoga and meditation, and even attended and worked at the Burning Man festival for 13 years. She has been fundraising with Help Hope Live since September 2014. This is her life now.

Elizabeth EB Forst Help Hope Live

EB is still “independent, active, and adventurous” after injury


How does your life look different today than it did right after your injury? 


Initially, because of my heightened medical state and complete paralysis, independent living was absent in my life. I was at the mercy of local health care agencies, where the caregivers had little or no experience with individuals recovering from a spinal cord injury. The care was downright poor. I had to identify and personally train local caregivers to support my health needs a.m. and p.m. This is the first mountain to climb after injury–educating and directing others on health care needs is exhausting as you onboard new team members, which even today happens often as my team shifts.

With my current team in place, I have greater control over my life. I am so grateful for this group of women who take such great care of me every day. Along with my ever-supportive family, they are my lifelines.

Elizabeth EB Forst Help Hope Live

Living independently was out-of-reach when EB was first injured

Finances have changed. Initially, with no work income and my dependence on Colorado Medicaid, I was paying exorbitant out-of-pocket costs for my certified nursing assistants (CNAs). Fundraisers with Help Hope Live helped my family foot the bill for many of my out-of-pocket costs that were causing me to feel like I was a financial burden. Luckily, Colorado is one of only a handful of states in the country that supports Consumer-Directed Attendant Support Services (CDASS), which, with approval from the state of Colorado, allows individuals like me to receive financial assistance from the state to pay my support team as I see fit, including CNAs, family members, and personal assistants. I break free of utilizing health care agencies and pay my own personally-trained staff.

My independence has improved with the assistance of my CNAs, personal assistants, and new technology within the home. I am an active advocate for the spinal cord injury community both nationally and locally. I travel often and take advantage of the beautiful outdoors here in Colorado as well as the live music scene. Red Rocks amphitheater is a favorite in the summer.

Elizabeth EB Forst Help Hope Live

EB loves catching shows at the Red Rocks


What are some of your hobbies today?


My biggest pre-injury hobby was travel and so being able to travel and find adventure after injury was paramount. With a lot of training and maybe a little bravery, I’m happy to say that I have flown over 15 times since my injury to places like New York, San Francisco, Los Angeles, and South Carolina.

I was an advanced scuba diver pre-injury, and I completed my first post-injury scuba dive last year in Mexico with the assistance of the therapeutic recreation department at Craig Hospital. As a team, we tackled 10 dives in just five days, with the deepest dive at 95 feet—quite a feat for a high-level quadriplegic! My dive buddies supporting me underwater were not able to learn what I needed via signaling from my body, so instead, we communicated intuitively by looking into each other’s eyes.

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While not all of my physical hobbies are still within reach today, I try to maintain a connection on a physical and spiritual level with the things that are attainable.


You were extremely active before your injury. How do you stay active today?


I go to the Craig Hospital PEAK Center every week and use the Lokomat and standing frame for extended lengths of time. I stretch with a physical therapist and use an FES bike to stimulate circulation and mobility; my CNAs do range-of-motion exercises with me every single morning and night. I receive acupuncture twice weekly and massage once weekly to stimulate my spinal cord and encourage return of mobility and sensation. The road is long but I try to stay focused.

Elizabeth EB Forst Help Hope Live

Therapy is a regular part of EB’s life after injury

I understand the extreme importance of staying active because of my background in physical therapy; it’s crucial to prevent healthcare issues that plague those living with quadriplegia, such as blood clots and pressure sores. Recently, I have been getting some return in my right arm, enough so that I can transition from sip and puff wheelchair technology to hand driving. This has been a huge accomplishment directly correlated to continual rehab efforts, even three years out from injury.


Do you think most people with spinal cord injuries have adequate access to health care and adaptive mobility necessities?


Absolutely not, and it’s a big problem. Health care access often depends first and foremost on proximity to a medical or rehab center that understands and is equipped to support individuals with a spinal cord injury. The unfortunate reality is there is a lack of such medical facilities–for example, San Francisco, a major metropolitan city, does not have a spinal cord injury center in the entire city. I am very lucky to live near Craig Hospital, which is a top-of-the-line SCI resource center.

Each spinal cord injury is a snowflake – different from the next – so it requires a tremendous amount of education and advocacy during medical visits to ensure medical professionals can support basic health care needs.

Elizabeth EB Forst Help Hope Live

“Every spinal cord injury is a snowflake – different from the next.”

Adaptive mobility can be a real issue as well. I experience these problems frequently when I travel, as basic transportation like taxis, rental cars, Uber, and Lyft are not readily equipped for individuals in power wheelchairs. Case in point: I was stranded in my hotel in downtown San Francisco on a recent trip because I could not locate a single accessible car. I missed dinner and plans that I had scheduled in the city because of this void of mobility access.


Is mobility support for people with injuries improving? Any examples?


I feel like there are no limits to what someone with quadriplegia can do today, especially with exciting improvements in technology. Craig Hospital’s technology department has helped me create an independent household – I’m able to electronically enter/exit my apartment without assistance, control my TVs/remote controls using sip and puff technology on my wheelchair, and use my computer with a specialized mouth-driven stick. Amazon’s Alexa speaker tower helps me control my lights, thermostat, phone calls, and text messages–crucial if I ever needed to contact 9-1-1 independently.

Elizabeth EB Forst Help Hope Live

Family support helped EB build an independent life over time


Can mobility costs become a financial burden after a spinal cord injury?


According to the Christopher & Dana Reeve Foundation, the first-year cost of injury-related expenses can top $1 million. That includes lifelong expenses like durable medical equipment, wheelchairs, room lifts, specialized beds, prescription medications, caregiving costs, plus the astounding cost of physical therapy that many insurance companies will not reimburse. For example, I pay $79/hour out-of-pocket at Craig’s PEAK Center twice weekly, $60/hour for acupuncture once weekly, and $100/hour for specialized physical therapy for my shoulder if I have anything left over. Many of these therapies are crucial to improved rehabilitation and basic overall health.

Traveling requires purchasing a specialized travel lift and budgeting for higher-end accessible apartments away from home or special hotel rooms. For someone with a spinal cord injury who can’t work, you have to ask: where is all this money supposed to come from?

I have three Help Hope Live fundraisers completed, but fundraisers truly only scratch the surface when you look at a long life of such requirements. Recurring donations to Help Hope Live are a really helpful source of support between events.


What are some of the biggest misconceptions about life after injury?


There is a persistent misconception that all people living with an injury or wheelchair have cognitive impairment. Friends seem shocked that I am still just who I was before my injury – same voice, same fervor for life. They say, “You still sound like yourself,” with surprise. And I just say, “Obviously!”

Elizabeth EB Forst Help Hope Live

“I’m actively participating in life to the nth degree after injury.”

Another big misconception is that you stop being able to actively participate in life after a spinal cord injury. My mantra has always been that anything is possible, and clearly, I’m actively participating in life to the nth degree after my injury. My friends say to me now, “You’re doing more after your spinal cord injury than I have ever done!”


What are you looking forward to in the immediate future?


I get excited about the light of the future, including adaptive technology and research advances to help find a cure for spinal cord injury. I look forward to improving advocacy efforts nationally as well as here in Colorado, to help augment the realization that the disability community is highly capable of working and being an important asset to each of their communities. I look forward to becoming an ambassador for the Christopher & Dana Reeve Foundation on a national level and the Chanda Plan Foundation on a grassroots level.

I am often told that I am an inspiration to others in the spinal cord injury community. Although it is meant as a compliment, it is not my intention to be an inspiration. I am just living my life, the same way it was before my injury, not allowing my paralysis to define me.

Elizabeth EB Forst Help Hope Live

EB is a proud ambassador for multiple spinal cord injury support platforms


Elizabeth EB Forst fundraises for the Midwest/West Spinal Cord Injury Fund. Click or tap to follow her Blog.

I Went from Independent Living to a Nursing Home After an Infection

My name is Jane Koza. I am 58 years old. I went from being a healthy adult to living in a nursing home by age 50. This is my story.


I was an all-star athlete in my youth, playing basketball and softball competitively. During my senior year of high school, we won the state championship in softball and basketball. I loved the experience of being on a team. Those great memories laid the groundwork for continuing athletics in college.

Jane Koza Help Hope Live

Jane was athletic and active in her youth


In 2005 when I was in my 40s, I learned that I needed knee surgery to walk comfortably. The knee surgery did not go as planned, and I contracted MRSA, which led to a second surgery for a total knee replacement—my knee joint had to be entirely removed.

After the second surgery, I slipped into a coma due to the infection. I went into a grand mal seizure and arthritic septic shock, resulting in a second infection. The infection traveled to my spine and left me with transverse myelitis, which resulted in paralysis from my chest down.

By April 2006, I was living a nursing home. I hadn’t even turned 50 years old yet.

Jane Koza Help Hope Live

Jane with one of her best friends, Stanley, in the nursing home


The transition was hard psychologically. You have to come to grips with the fact that you will never walk again. You expect to face medical challenges when you are in your 70s or 80s, not when you are in your 40s. It was also difficult to accept the fact that the best place for me to be would be in a nursing home where I could receive round-the-clock care as needed, including continual social and physical support.

I am different from the other residents here at the nursing home. I am still very young and active compared to most of the other residents. I still enjoy going to concerts, shopping, and visiting with friends outside of the nursing home, regularly.

Jane Koza Help Hope Live

Jane, pictured with her sister, is younger and more active than most other residents


It was extremely important to me to find independence and avoid being bedridden once I realized that I would be living in a nursing home. I also had to find a way to cover some of the medical expenses associated with my new life, including:

  • A wheelchair with greater flexibility and movement than the geriatric medical chair provided by the nursing home;
  • Special wheelchair cushions that reduce painful pressure sores, which are not covered at all by insurance;
  • Physical therapy so I can learn to transfer myself from my wheelchair to a bed or seat, and gain more self-sufficiency so I can someday leave this nursing facility;
  • Daily essentials like drainage bags, backpacks, cup holders, and adaptive equipment
Jane Koza Help Hope Live

Jane was overjoyed to meet her first Help Hope Live fundraising goal

These things can improve my quality of life and are just one part of what makes life worth living.

Even having the same caregiver day-to-day can improve your life when you are living with an illness like transverse myelitis. I will also encounter additional expenses in the future, so I am setting my sights on fundraising to offset the cost of a power chair, a private caregiver or aide, and more advanced physical therapy programs. These expenses can make a difference to my level of independence in the future. They would have a profound effect on my life.

Jane Koza Help Hope Live

Jane creates unique tree of life coloring pictures in exchange for donations


When my priority was to get a better chair than what was provided by the nursing home, I began fundraising with Help Hope Live for the Mid-Atlantic Catastrophic Illness Fund in 2015.

My beloved high school, Mother Seton, learned about my fundraising efforts and really came through to help me. The alumni association was instrumental in helping me reach my first fundraising goal. I couldn’t have done it without them. With their help, I was able to reach my goal and get the wheelchair I had been waiting for.

Jane Koza Help Hope Live Mother Seton

Jane’s former high school has helped her to fundraise

Help Hope Live has made a huge difference in my life, both in connecting me with old friends who can support me and in helping me monetarily offset the out-of-pocket medical expenses I could not afford alone. For that, I am eternally grateful.

To me, hope means that things can be better than they are today in the future.

Jane Koza Help Hope Live

Jane calls herself a “true survivor” navigating life with transverse myelitis


Jane Koza fundraises for the Mid-Atlantic Catastrophic Illness Fund. Click or tap here to read more stories about how mobility can change lives.

Touched by Transplant: My Childhood Friend Became My Kidney “Sister”

As she experienced end-stage renal failure, Frances V. Gilmore endured 10 hours of dialysis every night to stay alive. She began fundraising with Help Hope Live in May 2012 for a lifesaving kidney transplant. She is the fourth and final winner of our 2017 Touched by Transplant “New Life” Contest in recognition of April’s Donate Life Month.

Touched by Transplant 2017 Help Hope Live

“I am so honored by my living kidney donor, Sandi Hamilton-Spall.

I was on peritoneal dialysis for two years because of a family history of high blood pressure that affected my mom, my older brother, and myself. I was my mom’s caregiver in the 70s until she got a kidney transplant in ’79. Her body rejected the deceased-donor kidney in ’82. I lost my brother in 2013 [when] he stopped dialysis.

I got sick in 2010. Never in my life did I think I would be traveling down the same path my mom had. I remembered how hard it was for her.

When I joined the kidney transplant waiting list, I posted on social media and asked my friends if anyone had a good, healthy kidney they wanted to give me. My childhood friend, Sandi, who I had lost contact with for 20 years, came to Texas for a visit that year. She offered me her kidney.

Frances and Sandi

Sandi and Frances on the day of their transplant.

I received my beautiful kidney “Creedy” on September 11, 2012.

Sandi saved my life. I always considered her a sister growing up and she proved just how special of a person she is by stepping up and being there for me. She will always be my hero and ‘sister.’”

I love my living donor2

We loved hearing Frances’ Touched by Transplant story. Find updates and more on the Help Hope Live campaign page in honor of Frances at https://helphopelive.org/campaign/1370

Touched by Transplant: Organ Donation Allows You to Leave a Unique Legacy

Patrick McEntee is waiting for a lifesaving heart transplant and is fundraising for transplant-related expenses via the Help Hope Live Great Lakes Heart Transplant Fund. Pat is one of four winners of our 2017 Touched by Transplant “New Life” Contest in honor of April’s Donate Life Month.

Touched by Transplant 2017 Help Hope Live


“In 2003, I began a new career as a high school religion teacher. I was paired with a mentor to help me adjust and learn: Bill Westerman, who, some years earlier, went from selling insurance to teaching the Catholic faith to high school students.

From the beginning, I was inspired by Bill, his passion for teaching, and his faith in God. Little by little, I came to know Bill’s story. In addition to having survived polio as a child, he also survived a heart transplant a few years prior to my meeting with him. His life was not without complications, but he continued to give every ounce of fight he had in him to remain a teacher and remind students, at the end of every class, “Don’t be stupid. And always remember: Mr. Westerman loves you.”

I have been a registered organ donor since I got my driver’s license at 16, but my reasoning for it has evolved in the 26 years since. At first, I simply registered because it seemed like the right thing to do. When I met Bill, my views on the subject of organ, eye, and tissue donation changed drastically.

Pat McEntee

Pat’s reasoning for being an organ donor “changed drastically” after meeting Bill

Bill was a tremendous inspiration and example to me. I couldn’t ignore the fact that I would never have met him if it weren’t for the selfless act of another who chose to be an organ donor. Bill took that person’s selfless gift very seriously. He lived every day to prove that his donor’s gift was being appreciated. He wanted to be a good steward of the gift of life.

I started to see the impact one person could have. Bill is one of just eight people who could have been saved by a single donor. Imagine the other stories that could be shared that are only possible because of one person’s choice!

Bill’s donor, and all organ donors, found a unique way to leave a great legacy, a legacy that would last much longer than their earthly lives. That donor didn’t just impact Bill; he impacted Bill’s family, friends, and people who had yet to BECOME Bill’s family and friends, including his future grandchildren.

Bill taught me a lot about being an effective teacher, but he taught me much more about life and being grateful for the gift of extra time on Earth given through the generosity of a stranger. Often in my life, I recognize God’s presence after the fact. Though I never expected to venture down the same road (as Bill), congenital heart conditions led to me being listed for transplant and receiving an implanted left ventricular assist device (LVAD).

June 5 is Pat’s 1,000th day on the transplant waiting list

Today is my 1,000th day on the heart transplant waiting list. Fortunately, I have the important lessons taught to me by my friend, Bill. I am so grateful for the last two and a half years, which would not have been possible without my LVAD. I have tried to make as much of a positive impact as possible with the extra time that I have been given, a lesson I learned from Bill. Volunteering in my community, particularly with organizations that promote organ, eye, and tissue donation, has given me the opportunity to share my story and to hear the stories of so many others who have been touched by transplant.

Today, both Bill and his donor are gone from this world, but their impact is still being felt many years later. They have left a legacy that not many can claim.

My donor is out there somewhere. I pray for my donor often, though I have no idea who he or she is. I ask all those who pray for me while I wait to pray for my donor too. Without a doubt, the hardest part of the transplant process is knowing that someone will have to die for me to have a chance at a longer and healthier life.

I remind myself that my donor is giving me a gift, and my gratitude for that gift will be shown in the way I use it to make a positive impact on the world. That’s the way Bill did it, and because he did, his organ donor adds a second generation to the impact of his legacy.”


Touched by Transplant 2017 Help Hope LiveThank you, Pat, for your reflections. If this story has impacted your perspective, read more of his story or sign his Guestbook at: https://helphopelive.org/campaign/8748

 

Touched by Transplant: Before My Earthly Eyes Opened

In 2014, David Tedrow’s liver function, and therefore his life, was coming to an end as a result of non-alcoholic cirrhosis. On April 3 of that year, hope was rekindled for David and his family as he received the liver transplant he needed to survive. David is one of four winners of our 2017 Touched by Transplant “New Life” Contest in honor of April’s Donate Life Month.

Touched by Transplant 2017 Help Hope Live


“April 3, 2014 was not a good day. I was dying. My liver had pretty much shut down. My brain was filling with ammonia. My thinking was clouded. I was so tired. All I wanted to do was sleep. My abdomen was distended with fluid and was very uncomfortable. How much longer?

Somewhere in the fog, I heard the sound of water lapping at a shore. As my vision focused, I saw that it was not water lapping at a shore, but an ancient African woman washing wet clothes at the end of the water. She was rhythmically slapping the wet clothes against a rock. She stood, looked at me, and began to transform into a young man. He looked confused, frightened, and all-knowing at the same time.

We shared secrets (I still don’t know what they were). White light began to course through me and into him. He took on a beatific countenance and vanished.

Around April 6, my earthly eyes began to open. The fog was gone, and the world was new. My family was there, same as they always were, but I was different. No one but me knew how hard the next month would be as I put the world back together. I could not let them know. They had been through so much.

But I was ALIVE.

Three years later, I am fully recovered. I am starting a new business, meeting new people, getting involved with organizations, and even joining meetups. And amidst all of this breaking of new ground, the most precious beginning of all: becoming a grandparent. This life is good!”

David Tedrow Help Hope Live

David with his wife, Mary


Touched by Transplant 2017 Help Hope Live

We love David’s unique vision of new life. If this story spoke to you, read more about David’s story at: https://helphopelive.org/campaign/4378

Touched by Transplant: This Mom’s Birthday Became Her Re-Birth Day

Teacher. Mother. Survivor. This is the story of Help Hope Live patient Kellie Murphy, one of four winners of our 2017 Touched by Transplant New Life Contest.

Touched by Transplant 2017 Help Hope Live


Kellie Murphy’s world was turned upside down when she received a diagnosis of multiple myeloma, a blood cancer caused by malignant plasma cells in bone marrow. The mother of two learned that to survive, she would need a bone marrow transplant as soon as possible.

Kellie also learned that the transplant would come with a host of out-of-pocket medical expenses, including co-pays and deductibles, temporary relocation and travel, caregiving costs, and a lifetime of immunosuppressant medications. She began fundraising with Help Hope Live as part of the Mid-Atlantic Bone Marrow Transplant Fund in February 2016.

In May 2016, Kellie found out that the bone marrow transplant she needed would be moving forward. “Believe it or not,” she wrote on her Help Hope Live campaign page, “cancer has made me realize how blessed I truly am.”


Last month, she sent us this incredible update:

“On May 31, 2016, I was admitted to the University of Maryland Medical Center to receive a bone marrow transplant in the hopes of going into remission from multiple myeloma. That day was also my birthday and my daughter’s birthday.

My time in the hospital was difficult, but the staff made it much easier. I will always remember their kindness. I had so many people to fight for, especially my son and daughter.

Now, almost one year later, I am engaged to be married, and my cancer is in complete remission. This year on May 31, I will turn 50 and my daughter will turn 21. We plan on really celebrating our joint birthdays and my new birthday since I have this chance at new life.

I am here because of others’ kindness, generosity, and many prayers. Thanks to Help Hope Live, we were able to make that difficult time a little easier on the people who were caring for me, and I will be forever grateful.

As of May 2017, Kellie is within $500 of her Help Hope Live fundraising goal. She fundraises for the Help Hope Live Mid-Atlantic Bone Marrow Transplant Fund.

Kellie Murphy Help Hope Live

Kellie, right, with her daughter, Amber


Touched by Transplant 2017 Help Hope LiveThank you for your story, Kellie! If you have been moved by this story, make a donation to Help Hope Live in honor of Kellie today at: https://helphopelive.org/campaign/10362