#nikkistrong
Donation protected
My niece, Nicole Marie is 28 years old and has been diagnosed with Mitochondrial Disease, Ataxia, Autonomic Dysfunction, and Dystonia. Nicole began showing symptoms at and 16 and has fought with this disease ever since. She suffers from paralysis on her left side of her body. 6 months ago she started having trouble swallowing food and was only allowed to eat minced food. This did not last long before things got even worse. After extensive testing, she was diagnosed with Esophageal Dysphasia and was only allowed to drink Ensure until June 29th when Nicole's disease attacked her tongue. Her tongue began to spasm and block her airway. She was taken by ambulance to Falmouth Hospital and immediately transferred to Brigham and Wome's Faulkner Hosptial where she underwent emergency surgery to put in a GJ feeding tube. She can no longer eat or drink by mouth. All fluids, food, and medicine are given through the feeding tube now. She still has issues with her tongue and is scheduled to see a Botox doctor for some relief in September. In late June her tongue had spasms so badly that it became life-threatening several times at her first hospital stay. She is currently relying on medicine every six hours around the clock to keep her airway clear.
This has been an extremely difficult and stressful time for Nicole and her whole family. Heather has had to take time off of work and at times she has had to spend entire weeks in Boston by Nicole's side. Nicole was sent to rehab but unfortunately has been sent back to the hospital due to complications with the tube.
Nicole is currently at rehab in Braintree once again and is hoping to go home from rehab. The plan was for her to go to rehab to get back to her baseline with PT and OT but unfortunately will leave rehab fully depending on people for transfers, bathing, and clothing.
There is no way to explain the emotional stress that Nicole, Heather and their entire family have endured. The past few months of constant hospitalizations, setbacks and complications have also led to a huge financial burden on Heather. Please consider donating to this amazing family to lighten the load of Heather and Nicole constantly worrying about medical bills and other costs that come with having a loved one in the hospital for such an extended period of time. Hopefully, we can lighten their load so that they can concentrate on Nicole's health and getting her home where she belongs with her family.
When Nicole comes home she will need some block nursing at least 4x a week at night. None of this will be covered by insurance and the family will have to figure out a way to get her the correct amount of care she will need as she finishes rehabbing at home and gets back to a level of independence that she fights for every single day.
Heather and Nicole are very proud and they really would never ask for any help unless they really had no choice. They go above and beyond to help others and they need us all right now!
This has been an extremely difficult and stressful time for Nicole and her whole family. Heather has had to take time off of work and at times she has had to spend entire weeks in Boston by Nicole's side. Nicole was sent to rehab but unfortunately has been sent back to the hospital due to complications with the tube.
Nicole is currently at rehab in Braintree once again and is hoping to go home from rehab. The plan was for her to go to rehab to get back to her baseline with PT and OT but unfortunately will leave rehab fully depending on people for transfers, bathing, and clothing.
There is no way to explain the emotional stress that Nicole, Heather and their entire family have endured. The past few months of constant hospitalizations, setbacks and complications have also led to a huge financial burden on Heather. Please consider donating to this amazing family to lighten the load of Heather and Nicole constantly worrying about medical bills and other costs that come with having a loved one in the hospital for such an extended period of time. Hopefully, we can lighten their load so that they can concentrate on Nicole's health and getting her home where she belongs with her family.
When Nicole comes home she will need some block nursing at least 4x a week at night. None of this will be covered by insurance and the family will have to figure out a way to get her the correct amount of care she will need as she finishes rehabbing at home and gets back to a level of independence that she fights for every single day.
Heather and Nicole are very proud and they really would never ask for any help unless they really had no choice. They go above and beyond to help others and they need us all right now!
Organiser and beneficiary
Elizabeth Cryan Wilber
Organiser
Bourne, MA
Heather Alden
Beneficiary
