Mike Porath often wakes to the words: Hi Daddy, want to sit on the potty? “Which means she wants to sit on the potty,” smiles the Los Angeles local, talking of his firstborn, Annabel. It might sound like your typical morning of potty training, until you learn that Annabel is eleven years old. She has Dup15q syndrome, a rare chromosomal disorder diagnosed when she was two, on the same day that her parents, Mike and Sarah, discovered that their 20-week-old foetus (now otherwise healthy nine-year-old, Isaac) was missing a kidney.

“Lying in bed that night we were shaken and lost,” Mike, a journalist by trade, wrote of that time. “This was not the life or family we had planned. I remember feeling small and hollow, a powerless husband and father. Whether it was a futile attempt to comfort my wife or a way for me to make sense of it all, I told her that we were going to do something good with this.”

That something was The Mighty, a digital health community supporting individuals and families living with chronic and rare diseases, mental illness and disability. “What helped us most as parents of a child with a rare disease and special needs was connecting with others, sharing experiences, asking questions, listening and learning,” says Mike. “We wanted to build The Mighty because we needed it and saw the value in it.”

So too did the world. Sporting more than a million registered members (with a new recruit every 20 seconds), The Mighty currently features almost 30,000 personal essays and videos – with recent titles including “Anxiety Makes Me Think My Friends Hate Me” and “There Are Days My Son Says He Hates His Wheelchair, and That’s OK” – that are viewed and shared 90 million times a month. Now in its fifth year, it’s something of an empowering empire, which Mike and Sarah helm amid the chaos that comes with raising three children (six-year-old Henry rounds out the trio).

“Being your own boss can be challenging, but it is liberating too,” says Mike, formerly the editor-in-chief of AOL news. “I get to choose how and where to spend my time.” Which is on the potty, in the morning, before getting Annabel and the boys to school. “Then it’s off to work. In the evenings I usually read Annabel a book or two before bed while Sarah does the same for our boys. I cherish this time. I try to get Annabel to tell me about her day – some days I get very little, while others I get more. Right now she is enthusiastic about spelling a word like “Mom” in a book and she wants a high-five every time she does it. I love how happy this makes her.”

As she embarked on a different path to her typically developing peers, Mike and Sarah found that when they stopped comparing Annabel to other children, life got easier. “It was like a weight off my shoulders. We decided that we would focus our efforts on two things for Annabel: happiness and independence. We want her to have as much of both as possible and we don’t put any limits on what’s possible.”

The Poraths do some activities as a whole family and divide and conquer for others. “One-on-one time with each kid is important too. We try to find time for all that,” says Mike, adding that he and Sarah also sneak in the odd date night. “We have some go-to babysitters that allow us to get out on our own every now and then. That’s important – it’s re-energizing.”

When asked what he hopes the future holds for his brood, Mike says he wants Annabel to enjoy meaningful relationships. “I want her to smile and laugh and find joy in life. I want the same for Isaac and Henry. I want them to live with compassion and courage and to make the most of their opportunities. I want them to lead full, rich, deep lives and find people they can share those with.”

His two cents for others caring for a child with special needs? “Live in the moment. There are so many things you could spend time worrying about, but you’re better off living in the moment and truly being present with your child. Find as much joy as you can and you’ll find you’ll bring joy to them and others as well.”

Sounds like solid advice for every parent.