Love for Taylor Lynn
Donation protected
Sending on behalf of my wonderful and amazing friend Tara Lynn Hummingbird who would do anything in the world for those she loves. She just needs some immediate help to improve her home so her children have the best quality of life during this difficult time. Here is Tara's message:
On Novemeber 6, 2018, I found out that my 10 year old daughter was diagnosed with Juvenile ALS, aka Lou Gehrig's Disease. This is a diagnosis change from her original diagnosis, which she received around her 2nd birthday, of Cerebral Palsy. Juvenile ALS is an extremely rare disease that affects only 2 out of 100,000 people every year. It is a progressive disease, and there is no cure, no specific treatment. This disease has affected Taylor's ability to speak, she is wheelchair bound (she used to be able to use forearm crutches, but that is no longer an option), and has spastic and weak muscles. However, she has an amazing spirit - a fighter's spirit. She is extremely intelligent, loving, caring, funny - she is a rare, beautiful soul. She loves school, she loves being around family, painting, animals - all activities that a typical 10 year old would enjoy. Her educational and emotional intellect has not been affected, and she remains a ray of sunshine in this dark situation.
I also have an 8 year old son, Jacob. Jake is extremely high spirited, a jokester, an entertainer and loves sports and video games. He plays football and basketball. I would love to enroll him in karate, to focus his mind, and hopefully help him deal with some of the emotional issues that this has had on him. He is a kind, loving, silly boy who needs just as much support, just in a different way.
I have been geographically separated from both of my children since 2015 due to my divorce from Taylor’s and Jacob’s father. Even though we have been geographically separated due to my military service and deployments, my kids have ALWAYS BEEN and will ALWAYS REMAIN MY NUMBER ONE PRIORITY. When I received the news of Taylor's diagnosis change, I immediately worked with the USAF to receive a Humanitarian Assignment to McChord AFB to be co-located with my children. Since Taylor's physical condition has deteriorated, I need to acquire/replace items that will increase her quality of life whenever she is with me in my home. She currently receives all of her treatments/therapies at Mary Bridge Children's Hospital, under her father's TRICARE insurance. Because of this, I will have to pay for the same items out of pocket, because TRICARE will only pay for the patient and one-household.
Taylor’s new diagnosis of ALS changes the future for Taylor and our family. I am asking for help, as these necessary modifications to my home and certain furniture/adaptive equipment are not covered by my insurance or any other programs that the military offers. It is my only wish that with these improvements and items, that Taylor will keep what independence she has, and will have the same quality of life in both homes.
My goals for Taylor include:
*Hospital-like bed - with head and foot raise functions/side bars
*ADA compliant bathroom items/bedside commode
*Bedroom furniture that is same height as wheelchair to allow easier access from bed to wheelchair
*Adaptive outdoor activity devices that will allow Taylor to participate in activities with family
*Lifting devices for assisted lifting and movement for family members to help Taylor
*Vehicle with wheelchair lift
*Slight home improvements, we are currently renting, (i.e., laminate coverings over carpet, temporary bars/wheelchair ramps) that will allow Taylor to have more freedom of movement
*Daily living activity items that will help with Taylor's expression and enjoyment of life (i.e., painting easel, arts/crafts, video game systems, iPad-like device with speech applications)
*We will eventually require upgrades to a permanent home (i.e, wood floors, larger doorways, etc.), once a one-story home becomes available*
Our family is dedicated and will continue to pursue the best treatments and accommodations for Taylor to improve her quality of life. I am truly grateful for any donations. I will continue to keep you all updated on Taylor’s progress and how your generous donations are used to help Taylor live her best life at home with her family.
If you are willing and generous enough to make a donation in a different way, please contact me directly. God bless and thank you for your support!
On Novemeber 6, 2018, I found out that my 10 year old daughter was diagnosed with Juvenile ALS, aka Lou Gehrig's Disease. This is a diagnosis change from her original diagnosis, which she received around her 2nd birthday, of Cerebral Palsy. Juvenile ALS is an extremely rare disease that affects only 2 out of 100,000 people every year. It is a progressive disease, and there is no cure, no specific treatment. This disease has affected Taylor's ability to speak, she is wheelchair bound (she used to be able to use forearm crutches, but that is no longer an option), and has spastic and weak muscles. However, she has an amazing spirit - a fighter's spirit. She is extremely intelligent, loving, caring, funny - she is a rare, beautiful soul. She loves school, she loves being around family, painting, animals - all activities that a typical 10 year old would enjoy. Her educational and emotional intellect has not been affected, and she remains a ray of sunshine in this dark situation.
I also have an 8 year old son, Jacob. Jake is extremely high spirited, a jokester, an entertainer and loves sports and video games. He plays football and basketball. I would love to enroll him in karate, to focus his mind, and hopefully help him deal with some of the emotional issues that this has had on him. He is a kind, loving, silly boy who needs just as much support, just in a different way.
I have been geographically separated from both of my children since 2015 due to my divorce from Taylor’s and Jacob’s father. Even though we have been geographically separated due to my military service and deployments, my kids have ALWAYS BEEN and will ALWAYS REMAIN MY NUMBER ONE PRIORITY. When I received the news of Taylor's diagnosis change, I immediately worked with the USAF to receive a Humanitarian Assignment to McChord AFB to be co-located with my children. Since Taylor's physical condition has deteriorated, I need to acquire/replace items that will increase her quality of life whenever she is with me in my home. She currently receives all of her treatments/therapies at Mary Bridge Children's Hospital, under her father's TRICARE insurance. Because of this, I will have to pay for the same items out of pocket, because TRICARE will only pay for the patient and one-household.
Taylor’s new diagnosis of ALS changes the future for Taylor and our family. I am asking for help, as these necessary modifications to my home and certain furniture/adaptive equipment are not covered by my insurance or any other programs that the military offers. It is my only wish that with these improvements and items, that Taylor will keep what independence she has, and will have the same quality of life in both homes.
My goals for Taylor include:
*Hospital-like bed - with head and foot raise functions/side bars
*ADA compliant bathroom items/bedside commode
*Bedroom furniture that is same height as wheelchair to allow easier access from bed to wheelchair
*Adaptive outdoor activity devices that will allow Taylor to participate in activities with family
*Lifting devices for assisted lifting and movement for family members to help Taylor
*Vehicle with wheelchair lift
*Slight home improvements, we are currently renting, (i.e., laminate coverings over carpet, temporary bars/wheelchair ramps) that will allow Taylor to have more freedom of movement
*Daily living activity items that will help with Taylor's expression and enjoyment of life (i.e., painting easel, arts/crafts, video game systems, iPad-like device with speech applications)
*We will eventually require upgrades to a permanent home (i.e, wood floors, larger doorways, etc.), once a one-story home becomes available*
Our family is dedicated and will continue to pursue the best treatments and accommodations for Taylor to improve her quality of life. I am truly grateful for any donations. I will continue to keep you all updated on Taylor’s progress and how your generous donations are used to help Taylor live her best life at home with her family.
If you are willing and generous enough to make a donation in a different way, please contact me directly. God bless and thank you for your support!
Organizer and beneficiary
Bridget Sweeney Behrens
Organizer
Yelm, WA
Tara Lynn Hummingbird
Beneficiary