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Help Julia Walk - Will she walk one day? Yes! and we would love for you to be a part of that miracle. This last weekend (08-12-2018) took her first steps of many. After months of therapy, she is taking self-initiated steps while being mostly supported by her mother. Just the act of bringing one foot in front of the other is quite a feat.
Born with a rare disease, Julia should have died at two months old. The disease is called Spinal Muscular Atrophy, or SMA. Killing neurons, SMA does not allow the signal from the brain to get to the muscles, so they atrophy due to lack of use. In December of 2016, the FDA approved a new drug called Spinraza. It stops the progression of SMA in its tracks and allows working neurons to be preserved; thus, giving the SMA person an opportunity to gain muscle and have a better quality of life. This has been the case for Julia, instead of an early death, Spinraza is giving her a chance at life.
Despite her weakness, Julia has surpassed doctors expectations. As far as her physical ability goes, she has gone from only moving her eyes to being able to sit independently for a short time, roll over, play with her feet and sing the alphabet. Because of faith, prayers and a God sent therapy called Movement Lesson by Michelle Turner, Julia is excelling in every way.
Adding Aqua Therapy to her routine will greatly enhance her potential to walk one day and reduce her high risk of severe Scoliosis. With severe weakness, the water releases the pressure of gravity and allows Julia to move more freely. With less gravity, her muscles don't tire as fast, and she can develop muscle tone which then will allow her to develop the strength to walk one day.
Many things prevent Julia from going to a public or private setting to have Pool Therapy. She is at high risk for sickness. Few therapists have experience with SMA children and even less have experience with SMA children on Spinraza. Traveling with Julia is difficult as well, so in-home therapy is preferable.
Up until now, Julia has been using the bathtub for therapy. She has outgrown that, and it's not nearly deep enough for her. Originally we, her parents, thought a hot tub would suffice, but Spinraza is proving to be an effective drug and an endless pool would allow her to grow and develop in ways a hot tub would not; one being depth and the other being exercise friendly. Insurance will not cover the costs, because they don't see its benefit from it. So we turn to the public because we know it is and will be key in helping her walk one day.
Please help Julia walk. We would be enclosing the pool so she could use it year round. The best case scenario would be to have the funds within a few weeks time. The sooner we can raise the funds, the sooner Julia can get out of the bathtub. God bless all who donate with personalized help to each individual's challenges. As parents, we thank you for your donations, and Julia thank's you too.
Born with a rare disease, Julia should have died at two months old. The disease is called Spinal Muscular Atrophy, or SMA. Killing neurons, SMA does not allow the signal from the brain to get to the muscles, so they atrophy due to lack of use. In December of 2016, the FDA approved a new drug called Spinraza. It stops the progression of SMA in its tracks and allows working neurons to be preserved; thus, giving the SMA person an opportunity to gain muscle and have a better quality of life. This has been the case for Julia, instead of an early death, Spinraza is giving her a chance at life.
Despite her weakness, Julia has surpassed doctors expectations. As far as her physical ability goes, she has gone from only moving her eyes to being able to sit independently for a short time, roll over, play with her feet and sing the alphabet. Because of faith, prayers and a God sent therapy called Movement Lesson by Michelle Turner, Julia is excelling in every way.
Adding Aqua Therapy to her routine will greatly enhance her potential to walk one day and reduce her high risk of severe Scoliosis. With severe weakness, the water releases the pressure of gravity and allows Julia to move more freely. With less gravity, her muscles don't tire as fast, and she can develop muscle tone which then will allow her to develop the strength to walk one day.
Many things prevent Julia from going to a public or private setting to have Pool Therapy. She is at high risk for sickness. Few therapists have experience with SMA children and even less have experience with SMA children on Spinraza. Traveling with Julia is difficult as well, so in-home therapy is preferable.
Up until now, Julia has been using the bathtub for therapy. She has outgrown that, and it's not nearly deep enough for her. Originally we, her parents, thought a hot tub would suffice, but Spinraza is proving to be an effective drug and an endless pool would allow her to grow and develop in ways a hot tub would not; one being depth and the other being exercise friendly. Insurance will not cover the costs, because they don't see its benefit from it. So we turn to the public because we know it is and will be key in helping her walk one day.
Please help Julia walk. We would be enclosing the pool so she could use it year round. The best case scenario would be to have the funds within a few weeks time. The sooner we can raise the funds, the sooner Julia can get out of the bathtub. God bless all who donate with personalized help to each individual's challenges. As parents, we thank you for your donations, and Julia thank's you too.