Tag Archives: muscular dystrophy

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.

No Limitations: Equestrian Vaulting

We spoke to Alanna Flax-Clark, a paraequestrian who competes in equestrian vaulting and shows in paradressage events. In 2008, Alanna contracted an infection that rapidly destroyed her ability to walk. For Alanna, hippotherapy was an introduction to the immersive world of adaptive athletics.

Alanna Flax-Clark paraequestrian adaptive athletics HelpHOPELive horses

Alanna Flax-Clark is a paraequestrian competitor.

“Sports like equestrian vaulting and dressage have played a big role for me in gaining strength, coordination and mobility,” Alanna said. “It’s important that no matter how you get around, whether you walk or roll, you feel confident and secure in your body. I’ve learned to feel stronger and happier through my participation in sports.”

About Equine Therapy

According to the American Hippotherapy Association, hippotherapy is a way for patients to “engage…neuro, sensory and movement systems.” As the AHA notes, “a horse’s rhythmic, repetitive movements work to improve muscle tone, balance, posture, coordination, strength, flexibility and cognitive skills,” and encourage patient responses that simulate the techniques used for walking.

horse therapy hippotherapy equine therapy

Hippotherapy can improve strength, flexibility and even cognitive skills.

According to Ride On equine therapy center, “the horse, in some respects, ‘lends’ his nervous system to the patient so that the patient may experience organized movement.”

While adaptive riding tends to be recreational, hippotherapy is considered medical rehabilitation and is always supervised by a physician or professional. Hippotherapy has been used to rehabilitate patients with cerebral palsy, autism, multiple sclerosis, traumatic brain injuries, spina bifida, muscular dystrophy and multiple other conditions.

HelpHOPELive equine therapy horse therapy rehabilitation horse riding horseback

Hippotherapy is always supervised by a professional.

New Challenges: Equine Athletics

Alanna began pursuing hippotherapy “with no expectations.” Today, she spends the majority of each week riding or training her horses for equine events.

hippotherapy horse therapy rehabiliation Alanna Flax-Clark

Alanna spends the majority of each week involved in equine activities.

While initially she worked with horses for physical therapy benefits, Alanna soon realized that she wanted more of a challenge. “After going through rehab and not seeing any progress, I began to get frustrated,” she said. “I wanted to get stronger, regain more mobility [and] coordination, and just be able to go outside in the fresh air and have fun.”

Over time, Alanna graduated from hippotherapy to adaptive riding lessons. At a riding show, Alanna competed in three classes and took home two first place ribbons and one second place ribbon. On a fateful day in 2013, Alanna saw an equestrian vaulting group perform at her riding facility. “When I saw what they were doing, I knew immediately that I had to get involved!” said Alanna.

equestrian vaulting gymnastics horse therapy

Equestrian vaulting is an impressive and challenging activity.

Equestrian vaulting is essentially gymnastics on horseback. To most, Alanna’s ambition as a wheelchair-bound rider seemed lofty and even ludicrous. But with tenacity, Alanna was able to begin competing on horseback at a walking pace within a year.

training equestrian vaulting Alanna Flax-Clark

Alanna kept practicing until she was able to compete at a walking pace.

The Benefits of Adaptive Athletics

Alanna identified some profound physical and emotional benefits of paraequestrian participation. “I didn’t grow up around horses and did not expect to fall in love with them as much as I did,” she said. “They really have transformed my life. Most people in wheelchairs participate in sports with other people who have similar disabilities. However, when I’m out of my chair on my horse, I’m on more of an even playing field with everyone else. You can’t even tell that I have a disability.”

Equestrian vaulting horse therapy hippotherapy Alanna Flax-Clark

“When I’m out of my chair on my horse…you can’t even tell that I have a disability.”

Equine athletics is supportive and collaborative, Alanna confirmed. “At practice my teammates ask for feedback on their routines and form; they don’t even see my disability,” she said. “They want me to jump right in and help. It’s an environment full of respect and encouragement.”

Equestrian vaulting hippotherapy Alanna Flax-Clark teamwork

Equine athletics is supportive and collaborative.

She hopes her tenacity will allow other individuals with disabilities to discover equestrian sports for themselves. “I’m the only [athlete] in a chair that competes at vaulting competitions, to my knowledge,” she said. “It’s a more difficult matter for people with disabilities to participate…at the competitive level – even though it shouldn’t be! Horses aren’t the first thing that people turn to when faced with an illness or disability. I hope that starts to change. Vaulting is truly an accessible sport for everyone, no matter your age or ability. When one person starts doing it, it opens up doors to others.”

Getting Started

Alanna urged fellow athletes to overcome their initial trepidation. “Many people think that getting on a horse is impossible depending on their disability, but if there’s a will, there’s a way!” she said.

equestrian vaulting equine therapy horses Alanna Flax-Clark wheelchair

“Horses are naturally empathetic animals.”

“Horses are naturally empathetic animals and can help people overcome their personal challenges. I never would have thought that I’d learn to post at the trot, be able to sit independently at the canter, and even do a shoulder stand or maneuver off my horse into my wheelchair!” Alanna said. I’ve made a huge amount of progress…I’m still continuing to make big strides and learn new things each day.”

Learn more about hippotherapy and paraequestrian athletics before you participate, and always discuss your plans with your support team. You can track Alanna’s progress in paraequestrian vaulting and dressage on her website.