Help baby Grey find his voice

What can we say about our little Grey? He sure has a beautiful smile, but one thing you can't see is that little Grey has to work really really hard to learn the simple things that you and I take for granted! You see Grey was born with Malan Syndrome: a diagnosis which saw us move our entire family across the world. In August 2022 we sat across from a geneticist as they told us the devastating news and that we should send our 2-year-old baby boy to live in an institution. We realised then and there that we desperately needed to get to a place that had a more inclusive mindset and where people with intellectual disabilities weren't hidden away. So we started applying for jobs in every English-speaking country (Malan syndrome has speech delay so that narrowed our options). After a few months of uncertainty, we finally packed our bags and headed to a place we had never been before: Newcastle Upon Tyne, UK. What wouldn't you do for your kid?

Now to bring in the sciency stuff: Malan Syndrome is an ultra-rare genetic condition and as of January 2022 there are around 200 individuals worldwide. The syndrome is associated with a loss of function in one of the two copies of the NFIX gene. The one functioning copy of this gene doesn't produce enough NFIX protein for Grey's little body to function. Symptoms include Intellectual disability, hypotonia, speech delay/inability to speak, severe anxiety and vision impairment to name a few.

The recommendation from the Malan Syndrome Foundation is early intervention through occupational, speech and physiotherapy. Through intensive play and learning Grey can make leaps and strides in forming neural pathways in his brain as he is exposed to new experiences. He is trying so hard to learn to talk and will potentially live an independent life one day but this requires an incredible amount of therapy, time and dedication. While being in the UK means we are in a more accepting society, it also means we can't freely access some of these therapies as non-citizens and the waiting lists are years long which results in us paying privately for sessions with experienced therapists. We are trying to keep up with it all but it is daunting and we sometimes need to prioritise one thing over the other. I never want to have to choose between helping my son learn to talk vs helping him learn to feed himself or run and jump!

All the money collected here will be to finance all the different types of therapies Grey needs and any additional money will be set up in a savings account for his future. It takes a village to raise a child and our rare little boy deserves the world so we are asking the virtual village for some help as we face the unknown and help Grey find his voice.

You can follow his journey here