Following World Down Syndrome Day, we conclude our 3-part blog series about the lived experience of a parent in the Down syndrome community. Living with three generations who have special health needs, Marie is a passionate advocate for the difference that research can make.

Marie has an older brother who has a congenital syndrome, and a three year old daughter with Down syndrome. Marie’s mother developed Alzheimers about five years ago, and Marie began to care fulltime for both her mother and her older brother.

In Part Three, Marie speaks about her reasons to have hope for the future for her daughter.

Part Three: “An emotional load was lifted” – hope for the future of children with Down syndrome

Is there a message you would like to give to researchers? How can they help you further?

My daughter’s life is a testimony to the importance of good research, and I am beyond grateful for the chance it has given her. Investigations have been carried out specifically involving her needs, due to researchers who have cared enough to see individuals with Down syndrome as important members of humanity, who deserve to have the medical research done so that they can have better health outcomes.

It often seems to me that the medical community as a whole doesn’t care much about Down syndrome research, or that they haven’t caught up to the reality of what is currently possible. A great deal of research ends up being done for other conditions, because the people affected have a stronger voice or there’s more money involved. An attitude of unconcern and defeatism still lingers, where professionals can tend to shrug off needs, saying: ‘what does it really matter, because they have Down syndrome.’

But it does matter. Thank God for people that care enough and are able to see people with Down syndrome as important and as contributors to humanity and society.

It seems to me that if we’re not funding this kind of research, then as a society we are responsible for medical neglect to a large population of people. A lot of beautiful, innocent people. Many can’t advocate for themselves, and we’re missing out on hearing their voices, because some of these medical issues inhibit them from expressing themselves.

Important doors have been opened through research, but there is so much more that needs to be continued. The health outcome improvements are huge when we have access to this research.

What gives you most hope when you think about the next generation of children with Down syndrome?

Personally, I have experienced that an emotional load was lifted from the diagnosis of Down syndrome. In the end, it’s just an extra chromosome, and yes, there are things that come with the diagnosis, but many issues are not inevitable: there are many aspects that you can help. There are many opportunities for intervention, but it’s sadly clear that without the research these opportunities would go unnoticed, and people would continue the script that someone is experiencing a particular problem and are stuck with it ‘because they have Down syndrome’.

With medical interventions, everything is so connected. If a person is healthier, it affects their cognitive functioning, and their communication. How are they able to present themselves and to communicate makes a huge difference. These individuals bring a lot of value to society. If they can’t communicate, we’re the ones missing out. They’re missing out too, of course – but we all miss out on a beautiful side of humanity if they’re not healthy, and if they have roadblocks to communication and their abilities. This is not an ableist attitude that treats people like they will have greater worth if they are more capable: I am more focused on the fact that they have gifts to give that are locked inside.

If that’s because of our neglect, because we’re not trying to give them the best health outcomes, we miss out too, because they are treasures and have so much to offer. If they are trapped inside, with a body and brain that’s not functioning as best as it can, then everybody loses.

I think the next generation of children with Down syndrome will see new possibilities unlocked that we have not seen until now. I know that good quality research can find new ways forward, and I hope to see this research become available to everyone.