Come Together For Jane
Donation protected
Jane just two weeks shy of being 13 years old was diagnosed with Spinal Muscular Atrophy (SMA) Type I at 10 months.
Spinal Muscular Atrophy (SMA) is a disease that affects the voluntary muscles of the body. In Jane’s case she is unable to support her body or move except for the minute use of her fingers to operate her power chair and computer mouse. She is also unable to swallow requiring suctioning every 15-20 minutes and is tube fed.
Jane is a happy, social, engaging, creative and intelligent young girl. She draws incredible pictures using a computer mouse and the light touch of two fingers.
She is very much into drawing and making cupcakes. She has now 250 plus imaginary princesses for example Princess Tuna, Lavender, Radish, Star Wars and Princess Disney Japan.
Her imagination is limitless. She loves to read the Cupcake Diaries and is currently on Book 24. She makes cupcakes for every birthday and event she can think of and is not past inventing a special reason for making a cupcake which she makes with the help of her caregiver. Jane is a collector with her current collection being Beanie Boo stuffed animals and she still believes in Santa Claus!
Jane loves everyone and everyone loves Jane, one of those remarkable people whose glass is always at full.
The highest risk for Children with SMA is infections and pneumonia to the lungs since their diaphragm muscle is atrophied. A simple cold can be life threatening for Jane. She breathes using her stomach muscles and needs a BiPap respirator during rest or sleep.
The families' goal is to earn the money to provide Jane with three very important needs a 1) therapy tub, 2) bathing system and (3) lifts to provide safe transfer and supporting of Jane for use.
The inability to move results in severe scoliosis, a lateral curvature of the spine for all children with SMA. As the curvature becomes more severe it can cause the ribs to press against the lungs, restrict breathing and reduce oxygen levels as well as injure the heart. Therefore the highest risk to Jane’s life as well as reduced pain is the increased susceptibility to lung infections and pneumonia.
Some parents opt to have their children’s spine fused to limit the affect of the scoliosis on the lungs and internal organs as the children grow. It is a painful life threatening surgery for the children and the decision to have the surgery is a serious one and often does not result in preventing these problems.
In Jane’s case the decision has been made to not have her undergo the surgery making the need to be able to move even in a small way very important to minimize further curving of her spine.
Over the years she has been supported with weekly movement therapy but now the scoliosis is so severe the therapy alone is not enough to keep her from the worsening affects of the scoliosis and pain.
In the water Jane has buoyancy enabling her to move her arms, legs and twist her body. Her movement specialist/therapist says Jane is in immediate need of the ability to move her body. Any movement even at the lowest level will strengthen her muscles.
To obtain this she needs a therapy tub and lift system for the tub.
In addition Jane can be bathed only in her bed, as she is unable to access the shower on a shower chair prone. The shower is not large enough to accommodate the prone shower chair and the caregiver needed to wash her. It is also very painful for her to sit in a sitting shower chair. Remodeling the house/bathroom to install a shower or tub large enough to bathe Jane with a caregiver is not feasible due to the size of the house and cost.
A shower/bath trolley that can wheel into her bedroom with a lift to transfer her from her bed or power chair to the bathroom would enable Jane to experience a ‘real’ bath and shampoo!
The cost for the therapy tub, shower/bath trolley and lifts for safe transfer and use comes to $25,000.
We are grateful to family and friends along with outside generous, caring individuals for financial help so Jane can experience better health, less pain and the comfort and cleanliness of a warm shower or bath.
Thank you for any contribution you are able to make toward giving Jane a Very Happy 13th Birthday.
Spinal Muscular Atrophy (SMA) is a disease that affects the voluntary muscles of the body. In Jane’s case she is unable to support her body or move except for the minute use of her fingers to operate her power chair and computer mouse. She is also unable to swallow requiring suctioning every 15-20 minutes and is tube fed.
Jane is a happy, social, engaging, creative and intelligent young girl. She draws incredible pictures using a computer mouse and the light touch of two fingers.
She is very much into drawing and making cupcakes. She has now 250 plus imaginary princesses for example Princess Tuna, Lavender, Radish, Star Wars and Princess Disney Japan.
Her imagination is limitless. She loves to read the Cupcake Diaries and is currently on Book 24. She makes cupcakes for every birthday and event she can think of and is not past inventing a special reason for making a cupcake which she makes with the help of her caregiver. Jane is a collector with her current collection being Beanie Boo stuffed animals and she still believes in Santa Claus!
Jane loves everyone and everyone loves Jane, one of those remarkable people whose glass is always at full.
The highest risk for Children with SMA is infections and pneumonia to the lungs since their diaphragm muscle is atrophied. A simple cold can be life threatening for Jane. She breathes using her stomach muscles and needs a BiPap respirator during rest or sleep.
The families' goal is to earn the money to provide Jane with three very important needs a 1) therapy tub, 2) bathing system and (3) lifts to provide safe transfer and supporting of Jane for use.
The inability to move results in severe scoliosis, a lateral curvature of the spine for all children with SMA. As the curvature becomes more severe it can cause the ribs to press against the lungs, restrict breathing and reduce oxygen levels as well as injure the heart. Therefore the highest risk to Jane’s life as well as reduced pain is the increased susceptibility to lung infections and pneumonia.
Some parents opt to have their children’s spine fused to limit the affect of the scoliosis on the lungs and internal organs as the children grow. It is a painful life threatening surgery for the children and the decision to have the surgery is a serious one and often does not result in preventing these problems.
In Jane’s case the decision has been made to not have her undergo the surgery making the need to be able to move even in a small way very important to minimize further curving of her spine.
Over the years she has been supported with weekly movement therapy but now the scoliosis is so severe the therapy alone is not enough to keep her from the worsening affects of the scoliosis and pain.
In the water Jane has buoyancy enabling her to move her arms, legs and twist her body. Her movement specialist/therapist says Jane is in immediate need of the ability to move her body. Any movement even at the lowest level will strengthen her muscles.
To obtain this she needs a therapy tub and lift system for the tub.
In addition Jane can be bathed only in her bed, as she is unable to access the shower on a shower chair prone. The shower is not large enough to accommodate the prone shower chair and the caregiver needed to wash her. It is also very painful for her to sit in a sitting shower chair. Remodeling the house/bathroom to install a shower or tub large enough to bathe Jane with a caregiver is not feasible due to the size of the house and cost.
A shower/bath trolley that can wheel into her bedroom with a lift to transfer her from her bed or power chair to the bathroom would enable Jane to experience a ‘real’ bath and shampoo!
The cost for the therapy tub, shower/bath trolley and lifts for safe transfer and use comes to $25,000.
We are grateful to family and friends along with outside generous, caring individuals for financial help so Jane can experience better health, less pain and the comfort and cleanliness of a warm shower or bath.
Thank you for any contribution you are able to make toward giving Jane a Very Happy 13th Birthday.
Organizer
Kelly Lodge Meek
Organizer
Walnut Creek, CA
