For Martina Sola, celebrating son Aedan’s first birthday was a bittersweet affair. Because amidst the cake and candles, the presents and parties, hung an unimaginably sad truth: this birthday may be Aedan’s last.

Aedan was born with lissencephaly, a rare neurological condition which has rendered his brain smooth, without folds. Just days after she gave birth to Aedan, Martina was told to prepare herself for the fact that he may not live past six months of age.

More than a year on, though, Martina has found a strength and resilience within herself that is almost god-like to witness. Speaking to her over the phone, with my own young baby sleeping in the next room, it was me fighting back tears, not Martina. For Martina, the tears have come and gone. They will come again, she knows, but in the meantime, she has one mission: to give Aedan the very best life can offer him.

Aedan’s initial diagnosis came just four days after he was born. Despite having a normal, healthy pregnancy (“My only issue was food aversion,” says Martina) and having the full gamut of pre-natal testing coming back clear, when Aedan was born, doctors immediately noticed that his head circumference was smaller than it should be. “At first, we weren’t too worried,” says Martina. “We weren’t getting a lot of information – only that his head was measuring small – but at the time it didn’t mean a lot.” Days of tests followed, but those days were also filled with adjusting to life with a newborn. “Aedan had a great latch, and apart from a little jaundice, he seemed perfectly healthy.” On the fourth day, however, an MRI was ordered. The news was unbearable: Aedan was diagnosed with lissencephaly, and given between six and eighteen months to live.

“My husband and I are very proactive people. We like to be prepared. We took all the prenatal classes, read all the books. And then this. Suddenly we understood that you cannot be prepared for everything. Because you are never, ever prepared to hear that. Never.”

Lissencephaly, which is extremely rare, can be caused by viral infection, genetic abnormality or poor blood flow to the fetus. In Aedan’s case, the condition was caused by a sporadic de novo mutation of a gene. “Basically,” says Martina, “it was like a blueprint error – something just didn’t copy over the way it should have. There was absolutely nothing we could have done to prevent it.” There is no known cure.

“That will go down as the most difficult day of my life,” Martina says of the initial news. “Getting that diagnosis was harder than it will actually be to lose my child, which is an eventuality our medical team has tried to prepare us for.”

While others may have retreated and gone to ground on hearing such devastating news, Martina rallied. A veteran of Silicon Valley start-ups, Martina has worked for some of the tech world’s most successful companies – a history that happened to come in handy when it came to this shocking new world of motherhood.

“We were devastated. We cried. But we had to dry our tears very quickly because we had a baby to take care of. A very sick baby who needed us,” says Martina. “So very quickly, we mobilized.” Mobilizing, in this case, meant gathering a hospice team to care for Aedan, and calling on Martina’s own reserves of strength. “I felt like I had to be strong for everyone; for my husband and his family, for my family, for our medical team. I wanted my son to have the best care possible, and I knew that it would be easier for his medical team to help him if they weren’t worried about me.

More than a year on, Aedan is – if not exactly thriving – defying the odds, a day at a time. “Initially the doctors weren’t sure he was going to live past six months, so there was a sense of, There’s not much we can do. I wasn’t happy with that – I thought, what if he does live longer? I wanted to give him the best I could while I could. So we employed a physical therapist – not with the goal of him rolling over or crawling or walking (I really don’t expect those things to happen), but just to give him the benefit of more movement. He deserves that. I really wanted to bring some hope into our lives. And I really do think that that has made all the difference.”

Now, Aedan’s hospice team consists of a feeding therapist, physical therapist, two early interventionists, a massage therapist, two social workers, two nannies, an on-call nurse, a pediatrician and a neurologist. “Sometimes I feel like I’m commanding an army!” says Martina, laughing. “Aedan’s calendar is more full than a CEO’s.

In many ways, Martina notes, Aedan is like any other baby, but there are obviously ways that he is different. “When he wakes up, he has his milk like any other baby,” she says. “But his breakfast is still a puree – he’ll probably never be able to chew. He has activities – physical therapy, massage, playtime. He has structured naps, and we go out for walks when we can. In some ways he is like a normal baby, but in many ways he’s not. I can’t take him to playgroups, for example, because the risk of him getting sick is too great.”

Does she feel frustrated, I ask? Resentful? “I do feel overwhelmed at times,” she admits. “It’s difficult for me to hear mothers with healthy children talk about trivial concerns sometimes. I feel sad when I see a healthy little boy running down the street – I feel envious for myself that I will never see Aedan doing that, but more than that, I feel sad for my son that he will never get to experience it.”

But having Aedan has been more joyous, says Martina, than anything she could have imagined. “I do not take him for granted,” she says. “Not for one minute. I am so grateful for the things we do get to do. I breastfed for ten months and felt a profound physical and emotional connection with him.” Early on, says Martina, a hospice nurse encouraged her to dress Aedan in different clothing every day. “We dress him up every day – he has a better wardrobe than me and my husband combined!” And of course, Martina captures every moment she can with Aedan. “We take so many pictures of him, and so many videos. I don’t like to think that every day could be his last, but I don’t take any moment for granted. I save snippets of his hair, I save all his clothing. I’ve taken imprints of his handprints and footprints a few times. We’re trying to do everything we can to capture this moment with our son.”

Martina and her husband hope to have more children in the future, but for now, their focus is on Aedan. “This, by far, is the greatest challenge I’ve ever had. But I made a decision early on to take my grief and shock, and repackage them into something purposeful. I want to give my son every opportunity I can, so that he has the best life possible while he is here. And I want to share our story with others. I want to talk with people about resilience and hope, about the ways we can move forward through the most tragic circumstances.”

While Martina has sought counselling (“Mainly to give myself the tools to navigate this scenario, and also to deal with other people who may not say the most helpful things”), she knows that nothing will ever prepare her for the end. “I don’t know how I will feel when it happens. I know it will be unimaginably hard. I pray that God gives me the strength to get through it. I pray that Aedan will not suffer.”

“Having a child like this, my capacity to love has increased exponentially. In the beginning, there were so many things I was afraid of. Now I know that I’ll never be scared of anything again. This is the scariest thing I’ve ever done. Nothing I’ll ever do again will compare.”