Madison Livingston

Family and friends of Madison are raising money for the nonprofit Help Hope Live to fund her uninsured medical expenses associated with her Catastrophic Illness – Quadriplegic Cerebral Palsy.

Madison (Maddie) was born via emergency c-section at 32.5 gestational weeks due to lack of oxygen to her brain that put her in fetal distress. Due to the Quadriplegic Cerebral Palsy, which is accompanied by bringing legally blind and spasticity of the lower extremities, muscular weakness, impaired motor control, poor head control, postural control, and balance, Madison spends much of her day in a wheelchair and is progressively losing what little functional abilities are present. Prolonged sitting in a wheelchair results in flexion contractures at hips and knees putting her at risk for pressure sores, osteoporosis, hips subluxation as well as increasing the potential need for corrective surgeries and Increased therapy interventions. Madison is currently on a bowel/bladder management program as the prolonged sitting is a major contributor to her constipation.

Since Madison was 3 years old, she has used a manual wheelchair and by 5 years old was capable of ambulating short distances in the home and in public with a standard gait-trainer, under the assistance of her mom, her primary caregiver.

When Madison turned 21 she became ineligible for the Physical and Occupational Therapy she had received for the majority of her life. When therapy is necessary to sustain mobility and muscle mass and then it is no longer received children and adults can begin to rapidly decline and the loss of muscle mass can cause many health issues.

In the last 3 years Madison has experienced a decline in multiple areas and one of the biggest is the ability to stand with assistance for any period of time. Madison is the light in the room, bringing happiness to all of those she knows, loves with all of her heart and tries to be as independent as possible. Unfortunately, her independence is minimal but even the smallest accomplishment are big for her.

For these reason we are taking steps to raise money to purchase Madison a Trexo Home robotic gait-trainer. The Trexo is the first robotic assisted walker, gait trainer, stander, and treadmill device approved by the FDA.

The Trexo is a $44k robotic device that will support Madison in an upright position allowing for lower extremity movement that is controlled, physiological and repeatable. This provides countless therapeutic and long-term benefits. While it may seem expensive it is impossible to put a dollar amount on Madison’s longevity and quality of life.

The Trexo Home device can enable active physical activities such as walking, in children and adults with debilitating Cerebral Palsy. It attaches on a Rifton Dynamic Pacer Gait trainer and ensures safety, comfort and provides support to Madison. In addition, the Trexo Home consists of two robotic legs that will attach onto Madison’s legs and can provide variable powered assistance to help her with the initiation and stepping in a physiological gait pattern.

Without the Trexo, this restricts her endurance and puts her at a high risk of falls. Because of her balance and endurance issues her ambulation is limited to very short distances.

Although she can initiate steps, she has no support or means to improve her initiation and ambulation skills. As Madison grows larger and heavier, manual walking assistance on a gait-trainer becomes more difficult, increasing the risk of back injuries for her mom and caregivers. These are costly and cyclical problems that can be improved by providing the proper equipment that supports being upright and provides robot assisted mobility.

Research tells us that even the most significantly impaired person, given enough repetition can learn new skills, but there must be many opportunities to practice movements.

Madison has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!