Fund for Alena and Alisa

Hello, I am seeking your help, so that we can help our two beautiful daughters, Alena (19) and Alisa (15), who have a rare degenerative, life-shortening neuromuscular disease called FRIEDREICH'S ATAXIA, or FA. There is currently no treatment or cure for FA.

This disorder causes a range of health problems such as aggressive scoliosis, diabetes, serious heart issues, extreme fatigue, muscle pain and spasms and gradually destroys the ability to walk, stand, swallow, speak, hear, see and even use their hands. As you can imagine, this means our daughters need a lot of care and have many medical appointments each week.

We urgently need a full-size, wheelchair-accessible van so that we can get Alena and Alisa to school, appointments and errands safely, without risking injury to the girls or ourselves.

Getting around is now very challenging. The girls are fully wheelchair-bound and need their wheelchairs at all times. So that means lifting two full-size manual wheelchairs in and out of our minivan several times a day and then helping Alena and Alisa transfer in and out of the vehicle safely – unfortunately, sometimes falls happen anyway. My back is in pain all the time from lifting the wheelchairs and transferring the girls. 

While the girls still have some function left, we would love to be able to take road trips to places like the Grand Canyon, the beach or to go camping, allowing them to experience life. But all of that is completely impossible with our current vehicle.

Mike works full time but since Alena and Alisa require such an enormous amount of care and personal attention, I am only able to work part time from home. In addition to the hands-on care that Alena and Alisa need, their brother, Adam, has Autism and suffers from extreme anxiety. He is unable to attend a regular high school and takes classes online at home and also requires a great deal of care.

To give some perspective on the severity of this disease, both girls have had a Make-a-Wish® and the highlight of Alisa’s year is the week she attends the Muscular Dystrophy Association’s Summer Camp, which is the only time she feels she truly fits in with other children.

We try to handle the challenges as they come, but the reality is that I was diagnosed with breast cancer last year, underwent a mastectomy and radiation and recently had reconstruction surgery. We also recently found out that Alisa will be need a five-hour spinal fusion surgery to correct her scoliosis, which will require a few weeks in the hospital, hours of rehabilitation and a long recovery period. Even with all these challenges we try to remain optimistic.

In spite of the girls’ challenges, they still volunteer their time to work with several different organizations that help children with disabilities.

We are reaching out to our family, friends and community to please help ...

Thank you,

Michelle and Mike