Touch down in Santa Cruz: An unbreakable family bond

We’ve reached the last story in our world tour series, which records my trip around the globe to meet with our wonderful and inspiring patients. I want to express my deepest gratitude to them for allowing me to share their inspiring stories, and I also want to thank you for reading and sharing these stories. We want to create a world where everyone has equal access to health, and to do that we need the help of people like you to spread the word. So thank you.

For the last leg of my journey, I left Taipei and headed to Santa Cruz, California to meet a beautiful family with a wonderful story about unconditional love and support.

Mark, Dee and their son welcomed me to their home where we shared great stories, countless laughs and many tears.

In 2015, Mark’s golf instructor noticed that his golf swing was off. With the weakness in his arm lingering, Mark consulted his family doctor and tried the recommended muscle ointments, then moved on to physiotherapy and muscle strengthening exercises. As time wore on, none of the therapies worked, and the functionality of Mark's arm continued to degrade as other parts of his body also began to weaken.

The day Mark found out he had ALS was a bitter-sweet day. After going from doctor to doctor, Mark came across a neurologist in 2016 who told him definitively, "You have ALS".

That same day, his son was being released from Stanford University Hospital. His son had been a college football player in his prime when he was in a car accident that seriously damaged his leg. Doctors worked hard to save it from amputation and it began to heal. However, the leg became infected and Mark and Dee worried that they would lose their son altogether. Luckily, the infection went away with treatment, but this extended their son's in and out hospital stay to about two years in total. On the day of his son's final release, Mark chose to push aside his bad news of the ALS-diagnosis and focused on being happy for his son.

At the start, Mark and his family were not really familiar with ALS but were aware that there was no cure. This feeling of powerlessness made them tense, uncertain and drained their energy.

Fortunately, the neurologist he consulted at Harvard specialised in ALS. She told him that there was a new medicine designed to slow down the disease, and advised him to begin treatment as soon as possible. Although the medicine was not yet available in the US, she had seen promising results among US patients, and so she told him about a team in Amsterdam who helped patients to access elsewhere-approved medicines.

That was the pivotal moment for Mark and Dee. They went from not knowing how to deal with his disease to having a solid basis to take a stand against ALS—not just fighting for access to a new medicine, but fighting to show that there is a choice. They are not the type to just roll over and accept fate.

At one point during our conversation, Mark began having difficulty gripping his fork and keeping his hand steady. His son looked up with a grin on his face and said, "Hey dad, are you drunk!?!" The spirit of Mark, Dee and their sons is exceptional. They turn lemons into lemonade. The same son who lost the chance to become a professional athlete is now a life coach for others facing similar situations.

They are not afraid of facing their emotions and opening up to close friends and family. Mark's family deals with this life-changing disease by shedding tears, showing their love, focusing on the options they have and by using lots and lots of humour.

During the interview, Mark said: “I think you and your team don’t realise how important the work that you do is. Not just getting the medication that I needed urgently, but also by just being there, providing an option to fight the disease, creating hope for people like me.”

Thanks for reading.

-S