Lucian’s Story of Hope

Hello from New Zealand

My husband and I with our sons Lucian & Arlo live in Dunedin, New Zealand and have had what we now know as a very similar journey to others with CFC.

For three and a half years we had no definitive diagnosis, in fact we got to the point where we just lived our life and stopped thinking about it, if we weren’t put in a box of a diagnosis then we could reach for the sky. It was a surprise when we finally received the diagnosis late in 2012 from our geneticist: Cardiofaciocutaneous Syndrome, now I’m not a very good speller and that is not fun to spell! Not only did I need to learn to spell this new word this syndrome happens to be rare – great! I instantly went onto the Internet and started looking for information which is not much until I came across the amazing website of CFC International. It felt great to be connected to others especially since we live down under in New Zealand. Then to my astonishment I found out there was going to be a conference in Orlando the next year, we had to go, we fundraised, booked our flights and arrived in the USA. I described what it felt like to people at home afterwards as walking into your family reunion. We had found our home, somewhere where you didn’t have to explain (or spell) CFC – Lucian’s genetic family. It was at the conference I became aware that it wasn’t the specialists I wanted all my information from rather the parents who had the understanding of the day to day.

Lucian started mainstream school in 2014 at the age of 5, he has a teacher’s aide with him full time and this has been so instrumental in his development at school. I was told by a parent who had asked her son why he likes different friends he said about Lucian “because he is fun and not boring”. To Cory and I those are the moments we have succeeded as parents to know that all that pushing Lucian in therapies and life to learn and interact is worth it. Lucian has always been made to live life, to engage in it and contribute in ways that he can. We are not traveling the same road as those around us, on a daily basis this is noticeable, but Lucian and his personality make it worth the trip.

Here is part of the article that I wrote for CCS Disability Action regarding Lucian’s transition to school:

“School… it should be an exciting time having your first child go to school, but for us it started with arguments, stress and the unknown. I wish we could have seen into the future and seen how much Lucian loves school it would have saved a lot of worry.

So many questions went through our minds; Is he ready? Will he cope? How will we do without our team of OT, Physio, SLT, Education Support Worker & CCS Disability Action? Will our new team be as good? Will we get Ongoing Resource Scheme (ORS) funding from the Ministry of Education? The list goes on.

After talking about school for the good part of half a year in the end a change in government funding made our decision for us: Lucian would lose his eight hours allocated for his Education Support Worker once he turned five. What was the point of keeping him in day care until he was six if he didn’t have any one on one support?

It was tough going through the ORS funding application and subsequent meeting to assign hours with Ministry of Education. Who wants to have a document with pages of what your child can’t do and then sit through a meeting talking about that document?

Lucian qualified for High needs for ORS, this combined with the loss of our ESW helped make our decision; Lucian was starting school at five.

It was extremely hard leaving our pre-school network. Some of them we had weekly appointments with for years and had become an intimate part of our lives that the majority of friends and family had never been part of. We had to give school a go, who were we as parents to say he wouldn’t cope?”

In contrast to this experience of talking about all the things Lucian couldn’t do we were lucky to participate in the Super Power Baby Project. This project is made up of 72 photographic portraits taken by Rachel Callander (whom daughter Evie inspired the idea), the book aims to address the way we speak about disabilities, turning the negative into the positive and talking about the “Super Powers” (special qualities and life-changing powers) each child has. Here is a quote from the book: “Lucian’s Super Powers: Lucian gives awesome hugs, he is full of love and care, and shows concern for others. Everyone knows him. He is warm and attracts people. Lucian has a glow about him – a beautiful energy. Life outside the ‘normal’ realms of society is hard work, it is constant but we feel as a family we have learnt a great deal about life and what’s important”.

I always look back at those first terrible couple of years when the feeding is crap and the sleep even worse, when you have no idea how to fix anything we could never imagined where we have come in such a short few years. We have no idea where we will be in the future, but I know that for us love and laughter are the key ingredients.

Claire Peters, New Zealand