#Help Zaira & Paulo Fight ALS

(On our wedding, July 2019, day at Paulo's house with Zaira and two of their grandchildren.)

 

(Cheers! Paulo and Zaira celebrating New Years Eve, 2011.)

(Paulo with his grandchildren, Pedro and Julia, and their father.)

(Paulo and his newest grandchild, Arthur.)

Those fortunate enough to have been touched by Paulo personally or professionally, know the magnitude of love and guidance this kind man has offered. Paulo has always been the selfless rock in our family and a civil servant in our community; he has touched countless lives through his generosity, professionalism and compassion.

It is our hope that together we can help relieve some of Paulo and Zaira’s enormous financial burden. Paulo and Zaira have depleted their life savings and at this point recognize the urgent need for help from their community. Any donation you can give would be received with endless gratitude and used entirely for medical and caregiving needs. We have set an ambitious goal of $44,000 USD in order to cover expected costs for the next 12 months. 

Regardless of whether or not you are able to give, we are especially grateful for your prayers and for sharing this page with others who may be in a financial position to support. 

We are trusting entirely in God’s love and mercy. May His Will be done. 

With deep gratitude,

Matthew Pandolfo (on behalf of the Lima family)
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*More details about the progression of Paulo’s disease and the costs of care are below for those interested.

Timeline of Warning Signs, Diagnosis, and Disease Progression
- Spring 2015: Paulo was walking outside his childhood home in Palmácia, Brazil when suddenly he fell unexpectedly. He didn’t think much of it, but then it happened again weeks later. Over the weeks, the frequency of falls began to increase but he kept it to himself, even when badly bruising himself. After a few months of inexplicably falling his speech began to slur and slow down. Finally he also noticed his neck would often be numb and at this time Zaira began to worry and scheduled a visit with the doctor.  

(Paulo with his siblings in Palmácia, Brazil. He is the one in the middle wearing jeans.) 
- Summer 2015: After several tests, Paulo was suspected to be with Parkinson's disease and he began treatment for that, while the neurologist continued to monitor the situation. 

- Spring 2016: Paulo’s symptoms rapidly intensified and he was readmitted to the hospital for additional testing. After a second round of testing, he was finally diagnosed with ALS.
- Spring and Summer 2016: Paulo began choking on food and losing his ability to swallow. He would cough for hours straight and many nights he would be up all night coughing as the muscles in his throat gave way and could no longer provide the reflex necessary to swallow. Doctors determined Paulo needed a feeding tube as he could no longer safely swallow. He began meeting with speech pathologists weekly and physical therapists daily. At night, he began to wear a BPAP ventilator to help him to sleep. He started losing all of his motor skills; simply putting on a shirt became an impossible and exhausting task.

- Christmas 2016: After coughing and choking for hours, doctors determined that Paulo would need a tracheotomy in order to breathe. After the risky procedure, the family stayed with Paulo (in rotating shifts) for an extended period in the hospital and celebrated Christmas together there.  (Video Christmas 2016 with Paulo and Jamille's family at the hospital.) 
- Winter 2017: Thanks be to God, Paulo was able to return home from the hospital after a month-long stay. At home, he required 24/7 care. Everyone learned how to live with this new standard. Paulo was now connected to a ventilator and several times a day had to be aspired - a very painful process that removes the saliva by sticking a long tube into the deep recesses of his lungs. 

(First time I met this courageous man, just look at this smile! April 2017.) - Spring 2017 - Present: Paulo only has use of his eyes. He spends most of his time in his bed, even to be cleaned, since the wheelchair has become very uncomfortable for him. Amidst his great physical suffering, we mourn the fact that Paulo cannot vocalize his thoughts, even his pain. We know though, even if he could, he wouldn’t be complaining. He always endured whatever difficulty he faced and turned his attention to helping others. 
(First time my parents met Jamille's family, 2019.) (On our wedding day at Paulo's house, July 2019.)

What are the monthly costs? 

- Health insurance (covers the auxiliary nurse, ventilator, feeding tube, and urgent care when needed: R$4120 ($824 USD) 

- Physical therapy: R$5400 ($982 USD)
- Speech pathologist (provides palliative care for Paulo’s throat muscles): R$500 ($91 USD) 

- Personal caregiver (cleaning, dressing etc.): R$1500 ($272 USD)

- Wound care specialists (help to manage Paolo’s painful bed wounds): R$450 ($84USD) per visit (2-4 a month)

- Home visits by doctors as needed (pneumologist, neurologist, urologists and primary care doctor): R$800 - R$1000 ($145-181 USD) per visit. 

- Medications and medical supplies not covered by the health insurance: R$500 ($91 USD)

Once you include basic living costs, the total monthly cost burden is R$20,000 ($3,636 USD). For some Americans, these costs may not appear to be extraordinarily high, but for a Brazilian, where the average monthly Brazilian salary is R$2,340 ($425 USD), these costs are enormous. The fact that the American Dollar is very strong right now means that your donation counts that much more. 

(Paulo with one of his wonderful caregivers, Ana Lúcia.)

Why is your donation so important? 

Quite simply, Paulo cannot live without each one of the needs described above, and the family can no longer afford the care. The need is dire - as the bills continue to pile up, each day brings Zaira new fears about what will happen next. 

Your donation provides Paulo with merciful palliative care and alleviates the incredible stress and anxiety this financial burden has left on Zaira. In the meantime, we continue to pray and hope for a miracle. 

Thank you!

We are forever grateful for your donation of any amount. Regardless of whether or not you are able to donate, we ask that you: 1) pray for a miracle for Paulo and a cure for ALS, and 2) share this page with your friends via email and on social media so that we can reach as many potential donors as possible. 

From the bottom of our hearts, thank you. Please know we will be praying for each of you.