After exhausting all available treatment options and meeting many other men and couples who have experienced unprecedented results, Matt would like your help and prayers as he prepares to undergo an advanced (and expensive) new approach to treating Muscular Dystrophy through stem cell therapy. Matt is currently recieving treatement (physical therapy) at Emory University MDA Clinic. Our hope for this treatment is that we'll be able to stop putting out fires and actually start seeing a real regression of his symptoms.
Matt's symptoms about ten years ago: falling down, numbness, some cognitive issues, waddling, unsteady gait and electric shock pain. After seeing several doctors, one finally ordered a muscle biopsy and sent her straight to the see the Nueromuscular Specialist at Emory after seeing the results. As traumatic as the Limb-Girdle Muscular Dystrophy diagnosis was, we knew that there had to be something to improve his quality of life and halt the deterioration. Although his symptoms, treatments and waking hours are often painful, he never lets it show and most certainly will never let it stop him. Misdiagnosed for 10 years, he has lived the last three years, however, in pain more often than not. His mobility (hand coordination and walking), energy levels, independence, memory have become severely impaired.
What's so great about Matt?
Through thick and thin, Matt has always been there in a moment of need and never turned down the oppurtunity to help and reach out to his freinds and others. He has always been active, held several companies, and been a hard worker. Some hobbies he hopes to be able to resume in the near future with the help of treatment are: playing bass guitar, take his two sons snowmobiling (when they are little older, of course), go hiking, traveling, being "Mr. Fix-It," and helping others (I could go on forever on this one). A wonderful husband and loving father to his two beautiful one-year old boys, he wants to be able to be active and play sports with them.
What's the hurry?
For now, Matt is fortunate enough to not be totally dependent on a wheelchair as long as he is not having to stand for too long or walk too far. But the race is on to try and keep it that way as his balance, strength and coordination become more and more a thing of the past as his condition is rapidly worsening faster than expected. His falling has caused him to injure and break limbs and bones. After finding out that this particular form of muscular dystrophy is non-steroid responsive and no medications except heavy narcotics may help the pain and might relieve the symptoms and will make him dependant and my have adverse side effects, stem cell therapy is being considered by many as the only viable option for improvement.
What is LGMD?
Limb-girdle muscular dystrophy is a term for a group of diseases that cause weakness and wasting of the muscles in the arms and legs. The muscles most affected are those closest to the body (proximal muscles), specifically the muscles of the shoulders, upper arms, pelvic area, and thighs.
The severity, age of onset, and features of limb-girdle muscle dystrophy vary among the many subtypes of this condition and may be inconsistent even within the same family. Signs and symptoms may first appear at any age and generally worsen with time, although in some cases they remain mild.
In the early stages of limb-girdle muscular dystrophy, affected individuals may have an unusual walking gait, such as waddling or walking on the balls of their feet, and may also have difficulty running. They may need to use their arms to press themselves up from a squatting position because of their weak thigh muscles. As the condition progresses, people with limb-girdle muscular dystrophy may eventually require wheelchair assistance.
Muscle wasting may cause changes in posture or in the appearance of the shoulder, back, and arm. In particular, weak shoulder muscles tend to make the shoulder blades (scapulae) "stick out" from the back, a sign known as scapular winging. Affected individuals may also have an abnormally curved lower back (lordosis) or a spine that curves to the side (scoliosis). Some develop joint stiffness (contractures) that can restrict movement in their hips, knees, ankles, or elbows. Overgrowth (hypertrophy) of the calf muscles occurs in some people with limb-girdle muscular dystrophy.
Weakening of the heart muscle (cardiomyopathy) occurs in some forms of limb-girdle muscular dystrophy. Some affected individuals experience mild to severe breathing problems related to the weakness of muscles needed for breathing.
What is Stem Cell Therapy?
Stem Cell Therapy (using healthy cells from your own body) is now considered to be our next and only hope towards improved quality of life for many MD patients. It is a treatment that does not poison the immune system and is the first treatment to show signs of actually repairing some of the existing damage.
Matt and his beautiful son, Amaoha.
Matt and his beautiful son, Ikenna.
Matt with his loving wife, Adaora.
Please share this with friends and family. Any help or support you can provide would go towards the treatment program expenses, medical equipment and associated travel costs as there are very few facilities currently offering stem cell treatment for MD. Thank you.
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