Tag Archives: chronic illness

Feeling “Blessed,” Raising Thousands, and Finding Hope: Our Clients in the News

Just a few months into 2017, Help Hope Live clients are getting their stories featured in news outlets across the nation. Here are three standout stories of hope.


Rachelle Ledbetter: Community Responds to Rare Diagnosis with Resounding Strength


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In 1968, Rachelle Ledbetter was the first child to be diagnosed with allergic bronchopulmonary aspergillosis (ABPA), a chronic condition characterized by an exaggerated response of the immune system to the fungus Aspergillus. By adulthood, her hypersensitivity to environmental allergens had developed into a secondary infection that would necessitate a double lung transplant.

Rachelle is the former owner of the Sequoia Sentinel weekly newspaper. Out of respect for her editorial legacy, the Kawaeah Commonwealth, a more recent incarnation of the Sentinel, published in-depth coverage of Rachelle’s medical journey, her “upbeat and positive” outlook, and her plans for a community-driven Help Hope Live fundraiser.

We learned in March that the Spaghetti Feed raised a whopping $8,880 for the Help Hope Live Southwest Lung Transplant Fund in honor of Rachelle. “Apparently, the food ran out after serving 300 meals,” Rachelle wrote in an update on her Help Hope Live campaign page, “and yet you kept coming!” (Rachelle’s Lifetime ‘Journey to New Lungs’)


Michael Thor: Returning Home and Rekindling Hope After a Life-Changing Injury


Michael Thor Help Hope Live

Michael Thor with his wife and caregiver

In November 2015, Michael Thor was hit by a car while riding his motorcycle. He sustained a C2 spinal cord injury. At the time, he was in the process of pursuing one of his lifelong dreams: opening a restaurant with a good friend. The accident put Michael’s restaurant plans and the rest of his passions on hold as he and his family adjusted to his new life with quadriplegia.

After a year and a half of out-of-state intensive therapy, and just a few months after its grand opening, Michael was finally able to return home to see his restaurant in action. Tears filled his eyes as he witnessed how his business partner and staff members had come together to turn their shared vision into reality. “I could not be more proud,” said Michael.

A fundraiser held at Michael’s restaurant kicked off fundraising efforts for the Help Hope Live Southeast Spinal Cord Injury Fund to support ongoing rehabilitation. “I can tell that Mike has been rejuvenated,” wife and caregiver, Sarah, said in an update. “It was a really big morale boost for him to get back home. We were able to raise around $6,000. We truly can’t thank you enough.” (Restaurant Holds Fundraiser for Paralyzed Raleigh Chef)


Kimberly Grossman: Feeling “Blessed” as Faith Community Steps Up to Help


Kimberly Grossman Help Hope Live

Kimberly Grossman with her twins

Though she’s fighting chronic kidney disease, Kimberly Grossman considers herself blessed. Kimberly was diagnosed with end-stage renal disease in her twenties based on symptoms that had been following her around since she was just three months old. Kimberly’s strong connection to a faith-based community in her area provided the starting point for her fundraising campaign.

A spaghetti dinner fundraiser for the Help Hope Live South-Central Kidney Transplant Fund became an emotional lifeline as Kimberly met with friends and neighbors who showed that they cared about her. She and her 5-year-old twins are lifetime church members. “We wanted to do what Jesus tells us to do and help as much as we could,” explained Kimberly’s pastor.

Kimberly “fought back tears” as she reflected on her gratitude for community support. She advised others facing a transplant to “find as many ways as possible to fundraise. There are lots of people wanting to help.” (Spaghetti Dinner Fundraising for Woman in Need of Kidney Transplant)


Want your campaign to get featured in the news, too? Reach out to your Fundraising Coordinator today to receive media outreach support. 

Has Fundraising Helped You? You Can Pay It Forward!

Has fundraising had a positive impact on your life? You have an opportunity to give back to your community and support other families facing a medical crisis. Last week, we featured Danielle Bailey, who has helped several local families kick-start their fundraising efforts with HelpHOPELive. This week, we feature five tried-and-true ways to start making a difference today.

pay it forward


…supporting families who are going through a similar situation.


You can help families navigate through the same challenges you’ve overcome. As heart transplant recipient Rick Brittell explains, “Before I got my heart, I was so tired of being away from home and isolated. Then my social worker reached out and asked if [my wife and I] would be willing to meet with a patient at the hospital who was facing a similar situation. We began to focus on supporting others. We started a support group in the local area that was open to lung and heart transplant candidates and recipients, caregivers and people who were grieving.”

HelpHOPELive Pay It Forward

You can be a vital source of support for another family.

Rick notes that this kind of support can make a tangible difference in someone’s life: “The doctors have said to us, ’You don’t know how much of a difference you have made.’ They even told us that people are being released 3-4 days earlier than average now that we are there to provide support!


…referring families to HelpHOPELive for nonprofit fundraising support.


Do you know someone who needs help fundraising for medical and related expenses? Help him or her understand how HelpHOPELive can help. Point other families in need to helphopelive.org for more information. If you would like additional resources to share with others who may need our help, contact us today.

Diane Maxwell, wife of transplant recipient Mark Maxwell, explains how she helped another family find us: “I met Jude Jamieson through a woman’s retreat, where I learned that she also had a husband with a chronic illness in need of a transplant. I encouraged her to contact HelpHOPELive and start a fundraising campaign since her husband’s transplant hospital required a $5,000 account balance at minimum to list a patient for transplant. They were able to raise the funds through the summer and fall. Her husband went into acute liver failure, but less than a week later, he had a new liver thanks to their fundraising efforts. All I did was be bold enough to suggest she contact HelpHOPELive. You guys did the rest, right on time.”

HelpHOPELive Pay It Forward

Diane referred Kevin and family to HelpHOPELive for fundraising help


…supporting HelpHOPELive’s mission.


Every donation to our nonprofit helps families across the country receive tangible and compassionate fundraising support. You know firsthand how important that support can be when a medical crisis strikes. Become a monthly contributor to HelpHOPELive today and begin paying it forward to families who need our help to combat the high cost of medical and related care.

HelpHOPELive Pay It Forward

Want to see the true impact of your gift? Keep up with stories of hope on our Blog and on our website, or get a handpicked selection of tips and stories in your inbox every month!


…using your next fundraiser to serve the community.


As Heidi Anderson, mother of 2-year-old transplant recipient Deanna, explains, “Deanna lived in the hospital for more than three months before her transplant. We were visited by many people during that time, including volunteers who would bring her toys and gifts. It truly touched my heart. I see so many children at the hospital now who really need a smile.” Heidi knew a fundraiser in honor of Deanna could provide a way to give back, so she “decided to collect toys for kids at the hospital through a toy drive as part of one of Deanna’s Valentine’s Day HelpHOPELive fundraisers.”

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The toy collection was a huge success, says Heidi: “So many people brought toys! It made me incredibly happy! We are still collecting today.


…donating in honor of a particular family.


After getting her own fundraising campaign rolling, LAM fighter and transplant candidate Nicole Seefeldt found a way to pay it forward. “I met Alyssa Mebs while I was getting my transplant evaluation,” says Nicole. “We just started talking one night and we became fast friends. Once I saw that Alyssa was fundraising for a transplant, I thought, what can I do to help her? I knew I was going to meet my first fundraising goal…so I donated what I had to give in her honor.”

HelpHOPELive Pay It Forward

Nicole, left, made a donation to HelpHOPELive in honor of Alyssa

Today, when Nicole asks for donations or donates to a fellow HelpHOPELive client, she keeps this advice in mind: “It’s not the dollar amount you give, it’s that you give at all. Not everybody has a lot of money, but since it’s tax-deductible, every penny is something that they can use that compounds the effect. I never want to put an amount that people have to give. I just encourage them to give what they can.”


You don’t have to have it all to give back.


As Heidi Anderson explains, “Giving back is something we should all consider. Whether you do it with a toy drive or something else, paying it forward is about giving love and kindness to others who need it most.”

Today, consider how you can give back to the community that has given you so much. If you have a great idea for giving back, contact us and we may feature your campaign in an upcoming Blog post!

Life With A Rare Disease For 7-Year-Old Paul Mustol

At 6 years old, Paul Mustol was diagnosed with Duchenne Muscular Dystrophy (DMD). Paul’s family began fundraising with HelpHOPELive in October 2015. Here is a look at life with DMD as told by Paul’s mother, Anna.

Anna and Paul Mustol HelpHOPELive

Paul with his mother, Anna


Describe a day in Paul’s life.


The morning begins with Paul calling to us to remove his nightly leg splints. We carry him downstairs. He takes two medications and several vitamin supplements with his breakfast. He needs assistance getting dressed. A special needs school bus arrives and Paul is loaded on the bus using a lift to avoid straining his legs.

Once he gets to school, he needs to rest before he does his work with the other students in his class. He needs extra help staying focused and understanding assignments. On a weekly basis, he receives therapy from a physical therapist, occupational therapist and speech therapist.

At dinner, he takes a few more vitamins. We practice deep breathing to keep his breathing muscles strong. We stretch and massage his muscles to reduce muscle contractures. We put the splints back on his legs to stretch them during the night.

Mustol family HelpHOPELive

“We…just try to enjoy each day,” says mom, Anna


What’s the most difficult part of the day?


The most challenging part of each day is at the end of the day when Paul is tired and weak. Instead of running around or riding a bike outside with friends, he is exhausted. It is a reminder of what he will face in the future.

We try not to focus on all the difficulties to come, but instead just try to enjoy each day. We want to appreciate the time we have together. It is uplifting to see how Paul has persevered with a smile on his face through the tumult of the last five months since the diagnosis. We feel blessed by the support and love coming from our family, friends and church community. From the minute we shared his diagnosis, people have offered help and have clearly shown us that we are not alone.


What does hope mean to you?


Hope cannot be taken away by a disease. A disease may shorten a life or make it more challenging, but it does not take away the value of that life. We have hopes for him and for his life. We hope that he can see his life as an opportunity to make a positive impact on those around him. We hope that through his disease, he can teach others about perseverance and overcoming obstacles. Of course, we always hope for a cure for DMD.

Paul Mustol HelpHOPELive Duchenne muscular dystrophy

“Hope cannot be taken away by a disease.”


What do you fundraise for?


The average annual cost per person living with DMD is over $50,000. When we first received our son’s diagnosis, we had no idea of the cost involved. Even though it is a genetic disorder, no one in my family had ever received the diagnosis before; it can occur as the result of a spontaneous mutation. Health insurance covers some of the cost, but many expenses are only covered after we meet a high deductible.

We will always need to cover the cost of daily medications, weekly therapy sessions and doctor appointments. He needs tests like echocardiograms or pulmonary functioning tests from time to time as DMD weakens his heart and breathing muscles. Every six months, we travel to the certified DMD care clinic, which is out of our home state.


How will Paul’s needs change in the future?


Because DMD is a degenerative disease, my son’s needs will increase dramatically with time. He will need a power wheelchair full time and an accessible van and home if he loses function in his arms, hands or legs. He may also face surgeries for bone fractures and scoliosis. Eventually, he will need machines to help with breathing and palliative care. The average life expectancy for people living with DMD is around 25 years, but the type of medical care one receives can make a big difference. Today there are more and more cases of people living with DMD living into their early 30s thanks to medical advancements.


How can we recognize Rare Disease Day in honor of Paul?


Think of someone you know in your community that has a disability or is sick. Find a way to show him or her kindness, whether through an act of service or just through a conversation. See the individual as valuable and important; don’t just see his or her disease. If the person wants to share his or her experience with the disease, listen and educate yourself. Ask how he or she is doing, and listen for more than just a standard quick response. If you are able, share your contact information and indicate that you are available to help if the need arises.

Paul Mustol HelpHOPELive muscular dystrophy

Celebrate Rare Disease Day in honor of Paul

The more attention rare diseases get, the more likely it is that researchers and pharmaceutical companies will investigate ways of treating these diseases. Awareness and knowledge also allows for earlier detection and diagnosis.


Follow Paul’s journey with DMD or donate in his honor on his HelpHOPELive Campaign Page. If you or someone you love is living with a rare disease or other catastrophic illness, start a fundraising campaign with our nonprofit to help offset medical and related expenses.

Voices of Hope: Living Well With A Chronic Illness

Anna Crum was in junior high school when she began to experience persistent double vision and sixth cranial nerve palsy in her left eye. An MRI revealed that Anna was fighting relapsing and remitting multiple sclerosis (RRMS). Anna explains how she holds onto hope while fighting the debilitating mental and physical effects of RRMS.

Anna Crum MS HelpHOPELive

Anna Crum is living with multiple sclerosis.


How do your RRMS symptoms disrupt your daily life?


Shortly after the diagnosis, I became legally blind and had to learn to read Braille and rely on a cane for mobility. My current list of symptoms has grown to include a different diplopia (double vision) in each eye, color discrepancy, contrast loss, nerve pain on the left side of my face, muscle weakness in my left leg, short-term memory difficulties, fatigue, bowel and bladder dysfunction, and the occasional slurred speech. Without special lenses, I would not be able to read or drive.

My symptoms are unpredictable. On a given day, there is a long list of things that can go wrong. But you try to plan and compensate as best you can to hopefully manage some of the more severe symptoms to prevent them from hindering your daily life.


What has been the most difficult part of your struggle with RRMS?


MS finds a way to keep chipping away at your independence. In my case, it took everything I had to make it through college. Despite my success, I am now living back at home, unable to work full time and leaning on family for support. MS forces you to reach out. Admitting you need help and accepting it can be very difficult, especially if you are naturally an introverted person who is goal-driven and independent.


Why do you think people with MS sometimes hide their illness from the world?


You encounter enough people who don’t understand and eventually you learn to blend in. I have many times described myself as an illusionist and I am sure other people living with chronic illnesses can relate. People don’t see the preparation or the aftermath.

Everything in my life has become so calculated. I plan how much walking I will need to do in a day, how many hours of energy I have, how much my eyes can handle or how much pain I can tolerate ahead of time. Everything is staged. Seldom do I let people see the daily struggle [and] the days where I can’t even get out of bed.


Do you have a resolution for 2016?


This year, I am focusing on transparency, community and relationships. The National MS Society has a saying: “Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other.” Too often, people with a chronic illness suffer in silence. When I was first diagnosed, I started advocating for awareness. It was a passion of mine. But eventually I lost the energy. All the energy I had focused on just surviving. Eventually I chose silence for security and traded my voice for a disguise in an attempt to mask my disease.

This year, I want to use my voice again; I want to make an impact. Hopefully my journey will help inspire someone else to keep pushing through. Too often those suffering wait until it’s dire before they reach out for help. Keeping the disease invisible gives it that much more power and it confines you. I want to inspire someone, somewhere, to not give up.


Why do you plan to embrace your MS this year?


At times it feels like a door slams in your face everywhere you turn, but you keep going, one step at a time. Eventually, MS gave me a new path. Because of my disease, I found a passion and hopefully an eventual career as a dietitian. I want to help others manage their symptoms as best as possible, improve their quality of life, and help them learn to thrive despite an illness. Nutrition isn’t a cure, but it can make a huge impact.

Anna Crum HelpHOPELive nutrition

Anna plans to help people with MS manage their nutrition.


What advice can you give to someone newly diagnosed with MS?

Make your health your number one priority. I paid dearly for the instances where my priority became school or some other goal where I pushed myself too hard. Don’t push yourself to go at anyone else’s pace or to meet anyone else’s expectations.

Focusing on what you stand to lose or have lost is too overwhelming. Instead, focus on what your disease adds to your life. This disease builds character, teaches resourcefulness, ingenuity, adaptability, resilience, and gives you a unique perspective. You are stronger than you know, and maybe you can inspire someone with your unique story to find their own strength. Focus on what keeps you hopeful, and hold onto your tenacity.


What does hope mean to you?

To me, hope encompasses endless possibilities. There are always new ways to adapt, a new perspective to discover, new lessons to learn, new relationships to form. There is ALWAYS a reason to keep persevering.


Anna is currently studying to become a registered dietitian and is working on a photography project on the invisible symptoms of MS. She is fundraising with HelpHOPELive for a stem cell transplant that could improve her life with RRMS.