Fatherhood and fighting for change in the world of rare disease
Daniel Lewi’s journey as a parent changed dramatically when his daughter was diagnosed with Tay-Sachs, his experiences set him on the path to advocate for this rare and deadly disease and eventually led him to founding The CATS Foundation to support other families on the same path. In this interview he shares his story and advice as a RARE Dad.
Please can you tell me a little bit about yourself and your connection with a rare disease as a parent?
My daughter Amélie was diagnosed with a rare disease called Tay-Sachs in 2011 and the age of 15 months. She was our first child and at the time we had no idea what the disease was, what it would mean for her and our family and what the future would hold. Unfortunately, Tay-Sachs is a terminal disease where the child loses the ability to function independently. They go from achieving milestones such as crawling, talking and eating to being confined to a wheelchair, being fed through a feeding tube, and requiring 24-hour care. Many children who suffer from the most common Infantile form of the disease will die before they are 5 years old.
At the time of Amélie’s diagnosis there was no charity providing support specifically for the disease in the UK or Europe, so we set-up The Cure & Action for Tay-Sachs (CATS) Foundation to fill this gap, support families and drive forward research for a treatment.
Can you tell me a bit about Amelie’s journey and how this changed your life?
The biggest challenge at the time with a disease like Tay-Sachs is that you know your child is going to die. You end up mourning their death before it happens, and this changes you and how you see things.
Amélie changed our life. At the time, we were young new parents who were adjusting to all the responsibilities that brought. After her diagnosis, setting up The CATS Foundation and meeting other rare parents it made me realise that we weren’t alone. In fact, there were lots of parents in the same position as us and that we were all going through similar journeys as individuals and as families. The biggest challenge at the time with a disease like Tay-Sachs is that you know your child is going to die. You end up mourning their death before it happens, and this changes you and how you see things. When Amélie sadly passed away in December 2017 at the age of 8 it was very surreal – we’d spent all these intense years looking after her and suddenly we didn’t need to be up at 5am making up her medication, letting carers into the house at 10pm and checking that all the places we visit had the required accessibility. In fact, many people asked us if we would stop our work with the charity now that she’d gone – that was a strange one for us. The work we do with The CATS Foundation was never about Amélie, we knew that we’d never be involved with a treatment she could use so it was a no brainer in that sense. Her passing has not stopped our drive and determination to find a cure for this cruel disease or continue to work in close collaboration with our international partner charities, companies, and institutions to find one.
We don’t regret any of the decisions we took with her care, and we know we did the absolute best we could for her while she was alive. I also think that you shouldn’t bottle up how you feel. If you want to cry, cry. If you want to laugh, laugh. If you want to scream, scream the house down – letting out these range emotions really helps and it’s 100% perfectly normal.
What were some of the challenges you faced as a Dad?
As a dad, the challenges, I think, were the same as my wife’s. We had huge guilt at the beginning that we’d passed on a gene that caused her disease (it’s autosomal recessive inheritance). But what could we do about that? We didn’t know so there was absolutely nothing we could do about it. So, what we decided to do was create a positive environment around Amélie and our other kids so that we always had a nice environment at home. I’m not going to lie, there were some tough days. She needed 24-hour care and we spent many nights awake with her when she was unsettled or unwell due to her disease. But, again, we had to think positively and embrace the good days with her. Some were tougher than others but seeing her fight every day made me stronger and realise that you have to enjoy each day and not let things get on top of you. It’s cliché to say, but you only live once so we wanted to make sure that all of us enjoyed each day together and not to live in regret.
How did you overcome these challenges and stay positive in hard times?
We overcame challenges as a family – to me that is so important. My wife and I have a really strong relationship where we can be truthful and honest with one another. We say when we’re having bad days, laugh on the good days but know that our grief is always there. If I could turn back time, I wouldn’t do anything different in the way we looked after Amélie, and I think that’s really important. We don’t regret any of the decisions we took with her care, and we know we did the absolute best we could for her while she was alive. I also think that you shouldn’t bottle up how you feel. If you want to cry, cry. If you want to laugh, laugh. If you want to scream, scream the house down – letting out these range emotions really helps and it’s 100% perfectly normal. What you and your family go through is so intense where the emotional toil can be overwhelming sometimes and needs to be released.
My wife and I have a really strong relationship where we can be truthful and honest with one another. We say when we’re having bad days, laugh on the good days but know that our grief is always there.
From your perspective as a dad, how did setting up the charity, The CATS Foundation help you process the journey with Amelie?
It helped because it made me realise that although we were unique within our group of friends to have a child with a terminal disease, there were many other people out there in the same position as us. It put things into perspective and by meeting other families it really helped us come to terms with Amélie’s diagnosis and what the future would be for our family. We were able to create this really close community who have been able to support one another through the toughest times we have all experienced in our families. It breaks my heart that I’ve got to know lots of children and adults who have died from this cruel disease, but I know that each of those families have a support network to turn to. At Amélie’s diagnosis 10 years ago we were told you’ll probably not meet another family with a child diagnosed with Tay-Sachs – it’s now completely different and families are connected within days of a diagnosis. That peer-to-peer support is so important and it’s one of the best things we’ve implemented at the charity with our Family Support Officers.
Do you have any advice for other Dads who may be going through or gone through what you have?
My advice is to talk to your friends, family and other people in the same position as you. It is so overwhelming at the beginning post-diagnosis, but once you find your disease community you start to realize that there are many other people in your position. You get the opportunity to meet some truly inspiring people who will change your life. Every time I attend a rare disease event, I’m inspired by those I speak to. I’ve seen so many patient groups started by parents over the years go on to make a big difference to their community and that is something that drives me on. Going through what we did as a family changed us – it would be naïve to think it wouldn’t. I think having a few friends who really get what you are going through is vital to help you manage your own emotions on the inevitably sad journey you’ll be on.
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