The Neriah Way

When we were 23 weeks into our pregnancy we found out that our little girl has a condition called Edwards Syndrome. We had, like most people, never heard of this and our research was terrifying. Edwards is described by the medical profession as being ‘incompatible with life’. As you can imagine, this news was utterly devastating to us and the advice seemed to be to prepare ourselves for a pregnancy which would not go to term and that if our girl was born alive she may only be with us for 4 weeks. We called her Neriah, meaning Light of God, and as the pregnancy went on she grew and thrived...we had a feeling that this one was a fighter. We were right! Neriah is about to celebrate her third birthday - This girl is definitely compatible with life. But Neriah faces huge challenges. Each one has been met with sass, determination and the brightness we see everyday in this incredible girl that we are so proud to call our daughter. We are however now facing a challenge too big for us to take on alone. In our determination to do everything that we can to make Neriah’s life the one she deserves, we are asking for your help. Our girl doesn’t speak yet, but we know what she would say about this next enormous hurdle she must jump... so over to you Neriah. ‘My name is Neriah, I am nearly three years old and have Edwards Syndrome. I see my extra chromosome 18 as something that gives me extra sparkle. I have been doing so well but we have been given a curve ball after Doctors told Mummy and Daddy that I have scoliosis or curvature of the spine. One said that "nothing could be done" but Mummy and Daddy have heard that before and know there are always options! We saw a great NHS consultant this week who was questioning whether I would cope with a plaster cast brace which would have to be put on under general anesthetic. If I have a plaster cast brace I would not be able to move around anymore or even sit up or have a bath and it would be really hard for me to breathe properly in this type of brace. All in all, a big no thanks from me! Thankfully my Mum and Dad agree. Mummy and Daddy cried an awful lot and I thought to myself they must be out of Oat Milk! Mummy hit the books big time which I found pretty dull but turns out she has found something... The London Orthotic Consultancy where they make state of the art braces called The Gensingen Brace. This brace will prevent my spine from deteriorating and possibly correct it too! I will still be able to roll, sit up and use my standing frame! Best of all the brace will not impair my breathing as much as other braces as it will have corrective breathing pockets. The thing is we have to do this independently. Mum and Dad have said it's going to cost more money than we afford. So I say, let’s ask for help. Love Neriah xx The treatment will cost £2940. Any help you can give us will be deeply appreciated. Thank you ❤️