River’s mum Hayley got in touch to share her son’s unique story. She gives us a glimpse into what life with Down’s syndrome in Tanzania is like.
River lives and loves his life fully and unapologetically. And he exemplifies the fact that every individual who has Down’s syndrome is unique, as is their experience of the world around them.
River and his mum Hayley
Birth and Diagnosis
Our birth experience was straightforward. We had an organized home birth and, other than his father not making it on time, it was all very fast and uneventful. We were so incredibly happy in our little bubble with two little boys. But pretty much immediately I had a niggling worry that something wasn’t right. I suspected River had Down syndrome, but after being reassured by numerous health professionals that he was perfectly fine, I tried to put my worries aside. I felt guilty for feeling the way I did and was happy to believe what the doctors were telling us. But deep down I knew I was right. However, following the all clear, we moved back to Tanzania, where we have our businesses and home. We carried on with life as a family of four.
That was until River was six months old. At a check-up a doctor told us there was little doubt. Following tests it was finally confirmed that he had T21. The funny thing about our diagnosis story is that I wouldn’t change it for anything. We didn’t feel any sadness or fear when it was confirmed because we’d already had months getting to know him. We could see that he was going to be just fine. He was healthy and happy, so we just carried on with our lives on this new path. One thing I did do was make a promise to never compare him to others and I’ve worked so hard to keep that promise to him. This has made our journey with Down syndrome so much more enjoyable for everyone.
Myth-Buster River
Fast forward to today and River is 9 years old. He lives with me, his dad and his big brother Skyler at the bottom of Mt Kilimanjaro. He is absolutely thriving. If ever there was a myth-buster, River is it! He attends an international school and is the first and only child with Down syndrome to ever go there. Education was one of my biggest fears because of the lack of facilities here in Tanzania and it was a struggle to see how we could make it work. But we did.
River lives and loves his life unapologetically
We were determined that he deserved to experience a school life so we decided to train his Aunty Glady to be his aide. It was the best decision we ever made for him, and we couldn’t have had a better experience in regard to his education. He is fully included in his classroom, with all his schoolwork being adapted and provided by us. And while that wouldn’t work for everyone, he is progressing academically every day. He’ll never be on a level with his peers, but neither do we expect or need him to be. He loves school and watching him being a loved and valued member of his class, benefiting both him and his classmates, is very special.
Life in Tanzania
Life here is very hard for people with Down syndrome and the lack of medical care, education and acceptance within society is difficult. Most people don’t ever get an official diagnosis. Few receive any healthcare or therapies and rarely attend school. Often the births are seen as witchcraft or punishments from God. It’s no exaggeration that life is tough, and I always worried what that meant for River. But luckily for us it has been positive, and I hope by experiencing River’s life others will see what is possible and life with Down syndrome in Tanzania will change. We truly believe it will, just like it has in other places in the world. The people River has in his life and continues to meet gives us hope.
River Today
I always worried about River’s lack of therapies and what that would mean for his future. But every day I believe more and more that it’s important to just let our children live. That’s not me saying that therapies aren’t important, of course they are, but a lot can be said for belief, support and determination. They play a crucial role in development and River is an example of that. He loves sports, swims like a fish, rides a bike without stabilisers, was fully toilet trained at four. He hikes regularly, loves to paint, masters his PlayStation, likes cooking and loves helping with chores. Honestly, I could continue this list for a long time!
There are also many things he finds hard and many things that just won’t happen for him, but that’s also ok. It doesn’t dent his worth in any way. He brightens any room with his cheeky personality and sense of humour, loves deeply and is loved by many in return. I remember those early days I spent praying that I was wrong and that he didn’t have Down syndrome. Now I wouldn’t change him for the world. Having a child with a disability is not easy and we’ve faced many challenges along the way. But I believe he is exactly who he is meant to be and everyday he proves that just being true to ourselves is enough.
Life with Down’s syndrome in Tanzania!
River Lives and Loves his Life Unapologetically
I don’t believe that River is just like any other child, and neither is it his responsibility to prove to others that he is enough. I do believe that he deserves to live and love his life unapologetically, with his differences and uniqueness on full display. He should never have to constantly prove his worth. Long may that continue for him and all others who have Down syndrome. Because our differences are something we should all be proud of and never wish to change.
If you would like to get in touch with the Down’s Syndrome Association for advice on any aspect of life with the condition, you will find our contact details here.