Team Anna
Donation protected
Josh and Katie's daughter, Anna is 21 months old and was just recently diagnosed with Spinal Muscular Atrophy (SMA) Type 2. SMA is a genetic motor neuron disease that results in progressive muscle loss. Without treatment the disease continues to progress rapidly, resulting in severe muscle atrophy, impacting the child's ability to move and breathe. Anna can't walk on her own due to muscle weakness in her lower extremities, but we are hopeful that with treatment and hard work, including rigorous physical therapy, that one day maybe she will be able to. Currently, she can walk short distances wearing braces and using a pediatric walker. We don't know what the future holds for Anna right now, but we have no doubt that she will continue to surprise us!
There is no cure for SMA and unfortunately, the two treatment options are the most expensive in the world. The newest of these treatments involves a medication, Zolgensma, which is a gene therapy. This has the potential to slow the progression of the disease, but it’s only FDA approved in children up to 24 months of age and it’s a very new treatment, which means there’s still a lot of unknowns. The alternative treatment, Spinraza which has only been commercially available since 2016, also has the potential to slow the progression of the disease, but it’s more invasive with frequent hospital visits (requiring anesthesia and medicine administered into the spinal canal every 4 months for her life). Even if insurance will cover the cost of one of these treatments, there is still significant out of pocket costs for hospital stays, travel, lab work, medical equipment, adjunctive treatments, physical therapy, and medication not covered by insurance.
Early intervention is critical and is Anna's best chance for a good quality of life. In addition to the financial challenges that Josh and Katie are faced with right now, they will also carry significant medical costs for Anna in the years to come. They are hard workers, dedicated parents and fierce advocates for Anna and they probably don't know how to ask for help, which is why this “Go Fund Me” page has been created for Anna.
Anna is full of spirit and determination. She loves to dance to the Beach Boys song “Barbara Ann,” attend swim lessons, play with her dolls – especially the one named “Baby,” drive in her car that is remotely controlled by her Dad, and is a mini me to her Mom. Anna is empathetic and loves life, she has a sense of humor and she’s a bright spot even on the toughest of days.
Please consider supporting Team Anna as Josh and Kate try to provide the best care for Anna’s future
There is no cure for SMA and unfortunately, the two treatment options are the most expensive in the world. The newest of these treatments involves a medication, Zolgensma, which is a gene therapy. This has the potential to slow the progression of the disease, but it’s only FDA approved in children up to 24 months of age and it’s a very new treatment, which means there’s still a lot of unknowns. The alternative treatment, Spinraza which has only been commercially available since 2016, also has the potential to slow the progression of the disease, but it’s more invasive with frequent hospital visits (requiring anesthesia and medicine administered into the spinal canal every 4 months for her life). Even if insurance will cover the cost of one of these treatments, there is still significant out of pocket costs for hospital stays, travel, lab work, medical equipment, adjunctive treatments, physical therapy, and medication not covered by insurance.
Early intervention is critical and is Anna's best chance for a good quality of life. In addition to the financial challenges that Josh and Katie are faced with right now, they will also carry significant medical costs for Anna in the years to come. They are hard workers, dedicated parents and fierce advocates for Anna and they probably don't know how to ask for help, which is why this “Go Fund Me” page has been created for Anna.
Anna is full of spirit and determination. She loves to dance to the Beach Boys song “Barbara Ann,” attend swim lessons, play with her dolls – especially the one named “Baby,” drive in her car that is remotely controlled by her Dad, and is a mini me to her Mom. Anna is empathetic and loves life, she has a sense of humor and she’s a bright spot even on the toughest of days.
Please consider supporting Team Anna as Josh and Kate try to provide the best care for Anna’s future
Organizer and beneficiary
Team Anna
Organizer
Austin, TX
Katie Hehman
Beneficiary