In April last year I was lucky enough to meet some amazing families who helped me through the devastating journey that Sandhoff disease took us on. With help from Lysosomal Diseases New Zealand and the National Tay Sachs and Allied Diseases organisation, my mother, son and I flew to Boston and spent 4 days talking, listening, learning, grieving and healing with others who knew what it was like.
Brooke was born in March 2006 and appeared healthy until her 9 month Plunket check. It was then that the decline started becoming obvious and by 14months she was diagnosed with Sandhoff Disease. Less than a year later she passed away in March 2008 three days before her second birthday.
During the year this disease slowly took our daughter, I found great comfort in the journals of other families, most of whom meet yearly at the NTSAD conference in the United States. It was my dream to attend this as soon as I heard about it as I didn’t know of anyone else in New Zealand at the time.
The conference was the best thing I could have done. Straight away we were given our supplies and Riorden was whisked off to enjoy children’s activities for the whole 4 days including a sibling session where he got to talk about his sister.
Mum and I went to the grief session first where I finally met my special friend I found on the internet, her daughter lived to be 6 with Infantile Sandhoff disease. There were sessions aimed at just grandparents & friends, there were sessions for just women, men and siblings. They broke the diseases down into Infantile, Juvenile and Adult forms, along with Leukodystrophies and Canavan.
Those sessions where we got to talk in a relaxed atmosphere were the best. We discovered we were all the same, even though we came from different parts of the world, different levels of society and different beliefs. We were all comfortable and enjoyed talking together which is something families with rare diseases are lucky if they get to do. There is just nothing like a conversation with other mothers about the ever changing seizures or the benefits of a big comfy pushchair over a wheelchair. Likewise with the men, they seemed to have quite a few impromptu sessions in the hospitality suite (bar), but whenever we found them they were always firmly engrossed in serious conversations about their child and how they were dealing with things. It was the best therapy for everyone!
There were children attending with Tay Sachs, Sandhoff disease, GM1 and Metachromatic Leukodystrophy, it was hard seeing them as I really wanted Brooke to be there with me, to park pushchairs next to another affected child’s, to touch the hand of another little angel. But on the other hand I was sad to see them, knowing what they were going through and what lay ahead. My goal was to hold another child and I did, ironically her name was also Brooke, she had GM1.
I found one of the sessions quite hard, it compared philosophies of care from one extreme to the other. One was all about equipment, feeding tubes and 24hr nursing care. The other was natural with no tubes or needles. I have bought home with me a copy of a DVD I found helpful when Brooke was first diagnosed. I have passed it on to LDNZ as I think it would be helpful for newly diagnosed families and it is called ‘Camerons Arc’. It follows a family’s journey with their doctors and how they decided on her care plan. Copies can be obtained from NTSAD also.
The Scientific session was parent focussed, we sat at tables according to our understanding of the therapies and medical advances while the Scientists moved around at set intervals and explained things to us (I was a beginner and honestly it still went right over my head). What sunk in though is that there is a lot going on that you don’t realise, and I am really glad they are on our side.
The ‘Action’ session was aimed at giving us ideas to raise awareness and fundraise to help find cures for all these diseases. It was empowering to see the enthusiasm some of the parents have, even though their children might have died ten years ago they are still going strong.
After all the talking, we were exhausted but a huge weight had been lifted. Riorden was sad to leave, he had a ball and I’m glad he has had this opportunity and knows he’s not the only one who’s lost a brother or sister to Sandhoff disease. A Rememberance Ceremony and a Gala Dinner ended the conference, goodbyes till next time and a long trip home bought us back to reality.
I will go again one day and hopefully I’ll be one of those empowering parents from 10yrs ago. Thank you so much LDNZ!
I made this picture of all the children I came to know before the conference and got to meet a few of them and many of their parents in Boston. I was surprised to arrive and find they had used it for the back cover of the conference booklet!