‘There’s nothing actually ‘wrong’ with Iggy. What’s ‘wrong’ is that he doesn’t fit neatly into this world.’

7 years ago, Iggy, a now almost 12-year-old little boy with bright red hair and a cheeky smile, was diagnosed with a very rare neurological disease, called Trip12, involving a genetic mutation on his 12^th chromosome. At the time of the diagnosis, he was the 21^st known case in the world.

His parents, Sarah and Jordan, originally from Texas and living in Europe for over 20 years, open-up about their experience in raising a child with multiple and complex needs, and how their journey in acceptance involved helping others.

‘I look back on those first couple of years and think yeah that was the hardest period of my life. Accepting a fate and diagnosis of my child that we had almost no information about was beyond difficult. All we knew for sure is that he’d be severely, cognitively disabled’, Sarah remembers.

With only a handful of other cases in the world and almost all of them still children, they were left with no information as to what this meant for Iggy’s care or life. They now had a diagnosis; a list of other conditions he could possibly have or develop; another list of basic things he probably couldn’t ever do; as well as a lot of unanswerable questions.

‘The doctor said Iggy’s life would tell us more about this condition than anyone probably ever could. And that was it. We had no contact with a pediatrician or any healthcare professional for almost a year’, recall Sarah and Jordan.

Yet, little did they know then, the diagnosis was only the very beginning of their difficult road ahead.

‘The isolation and loneliness was the hardest thing. And that comes from society and has nothing to do with his condition, which is the saddest part. Because there’s nothing actually ‘wrong’ with Iggy. What’s ‘wrong’ is that he doesn’t fit neatly into this world. The focus is always on his disabilities and in comparison, to a ‘normal’ functioning child – what he can’t do – what he’ll probably never do. It’s never about who he actually is and what he brings to this world.’ explains Sarah.

They explain that it wasn’t just societal perceptions and gaps in information and support in the healthcare industry that made their experience difficult, but also in the education system where Iggy went to 4 different schools in 5 years.

‘At this point nobody really knew what his needs were, so he was wrongly shuffled around from school to school. Eventually we were told he couldn’t go back to his current school in the autumn, but there was not a place in any other school for him. We got an education lawyer, filed a lawsuit, which magically got him placed into an appropriate SBO school one day before our court hearing. Before that many people working in the system were telling us the shortage of places in special education meant that Iggy needed to stay at home with a care worker, rather than attend school, potentially indefinitely’ Jordan explains.

Out of their experience and the desire to help others, Sarah and Jordan set up A Different Story, a foundation rooted in community building and supporting and empowering families caring for a child with a rare disease and/or intensive care needs.

‘In addition to offering families information and advice in navigating a complicated and sometimes bureaucratic  health and benefits system, we also wanted to raise awareness of the importance of kids that are different in this world and celebrate their lives’, beams Sarah. 

Years on, and with a lot of special education and support, Iggy’s clearly exceeded expectations and is thriving.

‘If you measure what it means to have a well lived and successful life by metrics like happiness and relationships – instead of being focused on educational or financial attainment – he‘s on his way to having a great and well lived life’, says Iggy’s father.

Whilst the daily more practical struggles in caring for Iggy are very real, it’s clear their lives are undoubtedly enriched by this little red head.

‘Iggy has helped us to see beyond a narrow perspective of what somebody’s happiness and ‘success’ look like. Every day he is about BEING not DOING and to have that constant reminder of what really matters is a tremendous gift. Being different is also a gift and it helps make our world more colorful. Before Iggy I think we saw the world in only black and white,’ says Sarah with tears in her eyes.