This is the biggest cause I’ve taken on and is very close to my heart. Jenn is a dear friend of mine. She was only 18 years old when she selflessly helped Rhonda and I out for about a year and a half caring for our triplets. This was during a very challenging time for us when our children were just babies-at about a year old. She was of great help then, and now her family needs help.
Jenn’s son Vance, has Ullrich Congenital Muscular Dystrophy (UCMD) and would greatly benefit from an apparatus called a Trexo. I hope to help them get this equipment to improve his quality of life. I've set the goal for this fundraiser at $39,900, which would cover the entire cost of the Trexo, minus the shipping fees. Please read below and donate and share if you can.
Vance is 10 years old and has a rare form of muscular dystrophy (a Collagen 6 Disorder) and Autism Spectrum Disorder. There is no cure for this disease, and it can be life-threatening. Vance suffers from severe muscle weakness, short tight muscles and joint contractures throughout his body. He needs assistance with all his daily living skills, including being turned several times during the night. He has physical therapy 3-4 times a week, speech therapy and massage therapy once a week, and ABA therapy 14 hours a week. Despite his physical limitations and hectic schedule, Vance is a very happy, loving and caring child and an amazing brother to his little sister, Presley. He brings a smile to everyone he meets, always making people laugh with his quick wit and great sense of humor.
Vance's parents have tried anything and everything to try and help Vance and slow down the progression of his disease, including traveling out of state for medical treatments and intensive therapy programs. Vance has made remarkable progress regarding his speech, communication, behavior and social skills, but despite all his progress in these areas, Vance stopped walking right before his 4th birthday. Because he can no longer walk, his muscles and joints have gotten tighter, and his scoliosis has worsened. All these things cause him much pain and discomfort throughout the day and disrupt his sleep. What is even more heartbreaking is that Vance remembers being able to walk and would do anything to walk again.
Several years ago, his parents learned about an amazing robotic walking device called the Trexo. Vance used the Trexo during a 3-week intensive therapy program in Los Angeles in January 2020. He showed a remarkable amount of progress in just a short amount of time, including increased strength and endurance, improved weight-bearing ability and range of motion, not to mention all the happiness that it brought him with the feeling of being able to walk again. The Trexo has numerous other benefits for non-ambulatory children, such as facilitating bone and muscle strength and development, improved body alignment, better heart and lung health, increased flexibility, better digestive health and quality of sleep, improved body awareness, just to mention a few. All these things can encourage independence, help with mental health and enable eye-level interactions with peers, which is what every child deserves.
The family would love to be able to purchase the Trexo for Vance, but unfortunately, this device is not covered by medical insurance, and it is incredibly costly with a purchase price of $39,900 or a monthly lease for $1,090 with a rent-to-own option. Any assistance you can offer by contributing or sharing this link would be greatly appreciated. The family thanks you from the bottom of their hearts!
Vance working hard during his intensive therapy at the NAPA Center in Los Angeles:
Vance Davis, 10 years old
Vance and Mr. Eric, January 2020
How the Trexo works:
Trexo at the NAPA Center in Los Angeles: