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Our beautiful baby girl has been diagnosed with Spinal Muscular Atrophy, Type 1.

SMA is a genetic disorder, recessively inherited, which means both parents would have to carry the faulty gene. There is no family history of this disorder on either side. The prognosis is grim and there is no cure, but there is hope as research is advancing quickly.

Here is more information on the disorder:

Please keep our baby girl in your thoughts.

Jennifer and Christian Swann
Placentia, CA

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Spring 2015 Photos:

Kennedy's Status

Kennedy has been doing beautifully since being trached last summer. She managed to escape the entire winter with only a short lived head cold despite the flu going through our house in January. Phew! She attends school three days a week at Yorba Linda United Methodist Church Preschool with her home health nurse and a one-on-one aide from the school district. She recently passed her Kindergarten readiness assessment with flying colors, demonstrating a number of kindergarten level skills.

We are currently trying to figure out where she will attend kindergarten in the Fall given her pulmonologist's "no more than 15-20 kids in her class" rule.

Just within the last week, Kennedy got back her power wheelchair. Due to the extensive documentation required and the limited availability of the therapists for wheelchair related appointments, it took over a year to get her new (larger) seating system. She now fits in the chair once again, which was the first hurdle. The second is operating the chair. Over the previous years, Kennedy lost her ability to operate the switch (a tiny joystick) that moved the chair. We think we are on to something with a custom made hand "rest" that sits on top of the joystick and doesn't require a lot of fine motor skills to operate. Kennedy loves being up in her chair and playing tag in the cul-de-sac with her brother.

The gene therapy trial is well underway with 6 of 9 infants having been treated. There is little public information out on the status of the trial except that therapy seems to be well tolerated (i.e., it is proving to be a "safe" drug) and that they are thinking of another trial for kids with type 2. It is possible that the therapy could be on the market within a couple of years or less if efficacy is shown. Its efficacy for older type 1 children like Kennedy is not known but not expected to be as impressive as newly diagnosed infants due to the extensive loss of motor neurons in older children. The drug cannot bring back lost motor neurons; it can only act on the ones that are still there.
We want to extend our heartfelt gratitude for your support through the years. It means the world to us knowing that so many people are pulling for our little girl. Please continue to follow us on facebook.

If you are interested in hearing more about how Kennedy is doing, please find our "Team Kennedy" page on facebook.

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