Rally for Nattie's Amputation
Donation protected
I'd like to introduce you to my beautiful Grandniece, Natalie. Or "Nattie" as we all like to call her. Natalie is one of the strongest, kindest, loving, and most determined 7 year olds I know. Her laugh is contagious, and her smile will light up the room! And did I mention Brave?
When Natalie was just 4 months old she was diagnosed with two medical conditions called, Neurofibromatosis & Pseudarthrosis. NF is a genetic disorder, that affects 1 in 3000 people, and causes tumors to grow on the nerves throughout the entire body.
Her tumor currently stretches from the middle of her back, up her neck and ear, over her shoulder, and recently has moved to her cheek. She will continue to get sedated MRI scans every year, to check for any changes, or new tumor growth, including her brain and spine. There is currently no cure, or surgery for Natalies tumor.
At 3 years old, Natalie suffered her first NF related seizure, and deals with headaches on a regular basis.
Pseudarthrosis, Natalie's other condition, is a bone condition that affects her right Fibula and Tibia. Her right leg is substantially shorter than her left, and while she does walk, she is unable to bear weight on her right leg, which results in extreme pain, and balance issues.
Over the past 6 years her pain has grown to unbearable levels, and together, with her Parents and Doctors, they have made the difficult decision to amputate her leg.
Natalie will undergo a multiple-step Symes Amputation in June of 2017.
The Syme's Amputation isn't just the common below the knee amputation. The procedure is a multiple step process, and is estimated to take up to 6 months, with everything healing the way we want it to.
They will start by amputating above her ankle, which will remove one of the two breaks. The second break is less than a few centimeters below her knee. Amputating at that point, right now, could cause a lot of issues, and pain in the future. With this part of the bone, they would put in a rod, and a bone graft with bone from her hip.
She will then be in a fixator cage, for 3 months, with weekly visits to Children's Hospital for x-rays. During this time, she will use crutches, a walker, a wheelchair, and if possible, her other leg to get around. If her bone accepts, and heals around the rod, they will take the cage off, and she will go into a cast for another month or so while the swelling goes down, at which point she will be fitted for a prosthetic, and the prosthetic can be made.
Once Natalie has her new prosthetic she will start physical therapy, and learn to walk on her new leg!
During this difficult time, Natalie's Mom, Amber, will be taking a 5+Month unpaid leave of absence from work, to care for Natalie full time.
This decision, and procedure is hard enough for a little girl, and her Family to endure, and I'd like to come together and lighten the load, so they can focus on Natalie's recovery without some of the worry about the finacial burden.
She has been a warrior through not only one, but two awful conditions, that no person should have to endure, much less a child.
Thank You for your support and any contribution you can make to help lighten the burden for this very strong and sweet little girl!
Love and Gratitude
When Natalie was just 4 months old she was diagnosed with two medical conditions called, Neurofibromatosis & Pseudarthrosis. NF is a genetic disorder, that affects 1 in 3000 people, and causes tumors to grow on the nerves throughout the entire body.
Her tumor currently stretches from the middle of her back, up her neck and ear, over her shoulder, and recently has moved to her cheek. She will continue to get sedated MRI scans every year, to check for any changes, or new tumor growth, including her brain and spine. There is currently no cure, or surgery for Natalies tumor.
At 3 years old, Natalie suffered her first NF related seizure, and deals with headaches on a regular basis.
Pseudarthrosis, Natalie's other condition, is a bone condition that affects her right Fibula and Tibia. Her right leg is substantially shorter than her left, and while she does walk, she is unable to bear weight on her right leg, which results in extreme pain, and balance issues.
Over the past 6 years her pain has grown to unbearable levels, and together, with her Parents and Doctors, they have made the difficult decision to amputate her leg.
Natalie will undergo a multiple-step Symes Amputation in June of 2017.
The Syme's Amputation isn't just the common below the knee amputation. The procedure is a multiple step process, and is estimated to take up to 6 months, with everything healing the way we want it to.
They will start by amputating above her ankle, which will remove one of the two breaks. The second break is less than a few centimeters below her knee. Amputating at that point, right now, could cause a lot of issues, and pain in the future. With this part of the bone, they would put in a rod, and a bone graft with bone from her hip.
She will then be in a fixator cage, for 3 months, with weekly visits to Children's Hospital for x-rays. During this time, she will use crutches, a walker, a wheelchair, and if possible, her other leg to get around. If her bone accepts, and heals around the rod, they will take the cage off, and she will go into a cast for another month or so while the swelling goes down, at which point she will be fitted for a prosthetic, and the prosthetic can be made.
Once Natalie has her new prosthetic she will start physical therapy, and learn to walk on her new leg!
During this difficult time, Natalie's Mom, Amber, will be taking a 5+Month unpaid leave of absence from work, to care for Natalie full time.
This decision, and procedure is hard enough for a little girl, and her Family to endure, and I'd like to come together and lighten the load, so they can focus on Natalie's recovery without some of the worry about the finacial burden.
She has been a warrior through not only one, but two awful conditions, that no person should have to endure, much less a child.
Thank You for your support and any contribution you can make to help lighten the burden for this very strong and sweet little girl!
Love and Gratitude
Organizer and beneficiary
Robin West
Organizer
Mukilteo, WA
Amber Shaw
Beneficiary
