Sophia’s Story… A Modern Day Miracle Nov18


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Sophia’s Story… A Modern Day Miracle

Sophia Jones is a Modern Day Miracle… and Now You Can Be a Part of Her Life, Her Journey and Her Story


At 4 years of age, Sophia was diagnosed with an incurable degenerative disease called Ullrich Muscular Dystrophy.  Ullrich is a rare, genetic, muscle wasting disease that’s estimated to occur in 1 per 1 million individuals. Ullrich is a condition that mainly affects skeletal muscles, which are the muscles used for movement.   Children with this disease require a motorized wheel chair, a mechanical ventilator at night to assist breathing because of weak respiratory muscles, a feeding tube, spinal fusion to correct scoliosis and a full time assistant at school to help with activities including using the restroom. sophias.story.002a Sophia showed severe muscle weakness soon after birth.  Early signs and symptoms were:

  • Difficulty with standing
  • Difficulty with walking unassisted
  • Joint stiffness (contractures) in her knees and elbows that restricted movement
  • Unusually large range of joint movement (hypermobility or floppiness) in her wrist and ankles
  • Weakness in the lower leg muscles, resulting in difficulty in running and jumping
  • Difficulty in getting up from a lying or sitting position
  • Difficulty going up stairs
  • Frequent falls…at least 15 times a day.  One landed her in the ER with a concussion
  • Waddling gait…young kids thought this was cute because she looked like a penguin when she walked

sophias.story.003b At that time, her doctor said that by late childhood, she would be unable to walk. He also said, “She’s healthy now,  but not for long.” We were in shock! Despite the fact that over 1.5 billion dollars has been raised for research by the Jerry Lewis MD Telethon over the past 42 years, there is still no cure or even a specific successful treatment, for Muscular Dystrophy. As her parents, this answer was not acceptable to us.  While still in shock, we had to dig deep within and ask ourselves, “Do we believe that miracles can still happen?  Do we believe that with God ALL things are possible?”  We started searching for miraculous and inspirational stories just to get us through each day. sophias.story.007 As much as it hurt we realized that we had done all we could for Sophia. We needed to turn this over to a higher power.  At first, it seemed impossible to utter those words. we said out loud, “If this is Thy will, then we will accept it. Please just let us know how to take care of this beautiful girl.” Then the unexpected happened. We were inspired and guided to a doctor who could treat our daughter. This was indeed divine intervention and we took a leap of faith. Sophia has been participating in a ground breaking medical procedure. Her first treatment was on June 23, 2012, and we immediately started to notice a difference.  sophias.story.004a We began to realize that: 

  • She didn’t need to sit right away. (The contractures behind her knee made it difficult for her to stand for more than a few minutes.)  
  • She didn’t complain of leg pain
  • Her gait was normalizing
  • She used to fall at least 15 times a day.  Now it’s unusual for that to happen
  • She used to have difficulty riding her bike down our street. Now she can ride 6 miles
  • She used to have difficulty balancing on a strip of tape on the floor.  Now she nails it
  • When we went “Trick or Treating” she made it through the entire neighborhood without needing to be carried.  The year before she could only walk to the end of our street which has four houses.
  • She started dance class
  • Her teacher at school noticed a big change in Sophia at recess.  She was no longer hiding under the slide for safety but was engaging and playing with the other kids
  • She walked home from school
  • She has developed a reflex in her knee area

sophias.story.005 This story would be very different if it weren’t for the treatments that Sophia has already received. With Ullrich one never gets better, only worse. Sophia is now 6 years old and continues to progressively get healthier everyday!  We still have milestones that we are trying to reach and she will continue to need 2 to 3 treatments per year to achieve that.   We’ll continue to use our resources to make this happen.  However, these treatments are extremely expensive and that’s why we’re now asking for your financial help. Thank you for supporting us in supplying the life-giving treatments that Sophia requires. We sincerely thank you for your donations and consider it sacred.  With love and gratitude, Matt, Diana, Madison and Sophia sophias.story.006d