A Wheelchair Van for Lilee
Donation protected
Lilee is nearly 15 years old. She has Spinal Muscular Atrophy - SMA. This is a progressive, genetic, neuromuscular disease. While Lilee was once a mobile toddler she is now completely wheelchair bound. In March 2016 Lilee had to have spinal rod surgery to correct serious scoliosis that was a threat to her internal organs. The surgery was a success and Lilee is sitting "tall in the saddle." Grand as this is , it has compromised the transfer of Lilee in and out of the family vehicle. And, though a manual chair is available for use, folded into the back of said vehicle, Lilee is no longer able to propel herself in the manual chair. This further loss of independence has been very difficult for her. Because of this Lilee is not able to get out as much as she needs and would like. A part time student, with tutors to help her with a learning disability, Lilee is more cut off then ever from social interaction, watching nearby friends dash off to have fun without her.
Getting a van for Lilee to use her electric wheelchair outside of the confines of our home and neighborhood - to shop, to go to her classes, to attend events, to go to the movies without having to have someone push her chair, to give her the independence so desperately needed by any teen girl but definitely needed by her at this time - is the only reason that would compel me to post on this site. My daughters needs, all my children's needs, go before my pride. So, I am willing to do everything in my power to make this a reality for her. Picture, stories, explanations - anything needed to show the need in the hopes of filling it. I continue to ask for and to thank you for reading and for your consideration.
*****A wonderful UpDate to this: I have removed the photo of the hydraulic van we were aiming for as we have had a gracious donation of a ramp and suitcase ramp so now, instead of having to fund a van that is already wheelchair accesssible - we can look for a "regular" van and have this ramp to use to make it accessible! (Thank you Diane). Not only will this make transport available to Lilee but with the suitcase ramp stowed away, we will be able to visit people we've not been able to who have no ramp access at their homes! (Colville Family! )****AND: Lilee has been approved for the new SMA treatment drug Spinraza and will begin her med procedures on Sept. 13 to begin dosing after. Spokane, WA does not yet have an administering site for the treatment so having to go to Seattle. This is all so very exciting as many have seen excellent strengthening results from these injections. She is very pleased and nervous, as am I. Most Sincere "Thank you" - which isn't big enough - to all those who have donated and messaged and sent prayers. I so appreciate the support that has been shown my girl. Many, many blessings to all. Thank you for reading and for your consideration.
#GoBeyondGiving
Getting a van for Lilee to use her electric wheelchair outside of the confines of our home and neighborhood - to shop, to go to her classes, to attend events, to go to the movies without having to have someone push her chair, to give her the independence so desperately needed by any teen girl but definitely needed by her at this time - is the only reason that would compel me to post on this site. My daughters needs, all my children's needs, go before my pride. So, I am willing to do everything in my power to make this a reality for her. Picture, stories, explanations - anything needed to show the need in the hopes of filling it. I continue to ask for and to thank you for reading and for your consideration.
*****A wonderful UpDate to this: I have removed the photo of the hydraulic van we were aiming for as we have had a gracious donation of a ramp and suitcase ramp so now, instead of having to fund a van that is already wheelchair accesssible - we can look for a "regular" van and have this ramp to use to make it accessible! (Thank you Diane). Not only will this make transport available to Lilee but with the suitcase ramp stowed away, we will be able to visit people we've not been able to who have no ramp access at their homes! (Colville Family! )****AND: Lilee has been approved for the new SMA treatment drug Spinraza and will begin her med procedures on Sept. 13 to begin dosing after. Spokane, WA does not yet have an administering site for the treatment so having to go to Seattle. This is all so very exciting as many have seen excellent strengthening results from these injections. She is very pleased and nervous, as am I. Most Sincere "Thank you" - which isn't big enough - to all those who have donated and messaged and sent prayers. I so appreciate the support that has been shown my girl. Many, many blessings to all. Thank you for reading and for your consideration.
#GoBeyondGiving
Organizer
Annie Ford
Organizer
Moses Lake, WA