Organ donation is a silver lining after a devastating ALS diagnosis
In November 2019, Paula Rodriguez’s sister Carla Puglia-Ribeiro was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also commonly called Lou Gehrig’s disease. On the day of the diagnosis, Rodriguez dropped everything and drove from Vaughan to Burlington to be by Puglia-Ribeiro’s side.
At that moment, Rodriguez made a promise to her sister that she would be there every step of the way, through “the good, the bad and the ugly.” She kept that promise until her sister took her last breath in June 2021.
“There is nothing positive about ALS. Not one good thing,” says Rodriguez. “But the one little silver lining of this awful situation was seeing the way it brought people together. Everyone rallied. There was an outpouring of support. It was really humbling to see all of the people who cared about my sister come together. We are so blessed to have such a strong support system.”
A radiating smile
Puglia-Ribeiro’s disease progressed very quickly. She lost the ability to speak within six months of the diagnosis and was in a power wheelchair by the next summer. She was unable to speak, walk or move. Those days were really difficult because the family knew that with time, she was only going to lose more quality of life. The one thing that Puglia-Ribeiro never lost was her ability to smile.
“I remember telling Carla that she was like a brownie – she oozed with goodness and warmth,” says Rodriguez. “Her smile and her eyes were the first things you noticed about her. She always had the biggest smile and she radiated light. If you didn’t love her, there was something wrong with you.”
A wish to help others
The only thing bigger than Puglia-Ribeiro’s smile was her heart. Before being diagnosed with ALS, Puglia-Ribeiro selected organ donation on her driver’s license in case of an accident. Afterwards, she told her family that this was something she would like to explore, not knowing if she would be able to donate with her illness.
In typical, witty fashion, Rodriguez says Puglia-Ribeiro told her family, “Well I won’t be needing them where I’m going.” With this, the family was put in touch with Anne Howarth, Organ and Tissue Donor Coordinator from the Trillium Gift of Life Network. Howarth and the care team at Hamilton Health Sciences (HHS) worked with Puglia-Ribeiro and her family to make the appropriate arrangements for donation.
“Carla and her family were so inspiring and brave,” says Howarth. “They made a tremendous impact on our donation team. Carla’s wish to help others at such an emotionally challenging time for herself and her family was inspirational. The love and support that her sister, brother, sister-in-law and husband provided was second-to-none alongside some well-timed humour and phenomenal smiles – I’ll never forget them.”
Saving the lives of four people
Being an organ donor meant that Puglia-Ribeiro would have to die in the hospital. Her original wish was to die at home but this last selfless act was true to her character. She underwent all of the necessary testing to determine what organs she could give. This meant bloodwork, ultrasounds and x-rays. The day after the testing, the sisters took the call from Trillium Gift of Life together. Rodriguez put the call on speaker so they both could listen.
The medical team informed her that they were going to be able to use her lungs, liver and kidneys which meant she could save and change the lives of four individuals. Rodriguez says Puglia-Ribeiro’s big smile and bright eyes showed she was elated with this news. Puglia-Ribeiro was happy her death was going to help other people and her family found comfort knowing they could honour her wishes.
The staff at HHS’ Juravinski Hospital made sure Puglia-Ribeiro and her family were comfortable. In true fashion, Rodriguez says her sister smiled and was courageous until the very end.
Carla Puglia-Ribeiro died with seven of her closest family members surrounding her. She was in a room covered in photographs of animals, a small act of kindness from her healthcare providers who knew she was an animal lover. Puglia-Ribeiro’s family called it her “liberation day,” knowing she would finally be free of the effects of ALS.
For more information about organ donation, or to register your consent to donate, visit the Trillium Gift of Life Network website.