Claire and David

Anyone that knows Claire & David Squires, or even those that have briefly met them, are aware that they don’t do anything by halves, nor does anything come easy for them. They are just two amazing parents, trying to do the best for their 3 children and their family.

I remember it like it was yesterday when Claire & David let me know that they were pregnant, I was absolutely ecstatic for them, they had been trying for a while, even suffering miscarriages along the way. Claire’s pregnancy was far from easy, as an early scan at 22 weeks revealed their unborn baby had something at the back of the brain, leading to more scans & testing. 10 weeks later, when Claire was 32 weeks pregnant, they were told their baby was weighing 1200g and was no longer growing.

Killian Patrick Squires, a gorgeous little boy, joined us in this world on 28th May 2021, however has faced challenges and a far from smooth sailing start to his life. Killian spent 65 days in NICU and the special care unit, where he was diagnosed with a rare genetic disorder which Claire carries the gene for, this disorder is called Emmanuel Syndrome.

Emmanuel Syndrome is a chromosomal disorder and disrupts normal development. It causes low muscle tone, development is delayed and it causes severe to profound intellectual disability. For little Killian, it’s a case of ‘wait and see’ during his development, with the help of grandparents, Clare & David are able to attend many appointments with physios, speech, ENT’s, OTs and many more specialists to try and get a better understand of Killian’s condition and what this means for Killian going forwards.

Killian is also deaf and can hopefully be fitted with a cochlea implant, however, he will also need further assistance with hearing. The family are currently learning sign language as one of the ways to assist Killian’s development.

The ongoing costs to provide for Killian are huge. The family have some, but little, support from NDIS (National Disability Insurance Scheme) but this will cover very little of what he needs, likely this will last around 1 week of his additional needs.

There are many pieces of equipment needed to help Killian, but these come at a huge expense. You will never hear Claire & David complain about these costs, or the huge amounts of their savings and income this is taking up, they keep their heads up and keep smiling, however the ongoing financial pressure is something I believe them to not need on top of everything else.

Claire & David would not change the cards they have been dealt in life and the way that they look at Killian and the way he smiles at them, shows they are meant to be. They are the most deserving people of support, both financially and emotionally and they would never ask anybody for help, it took myself several times to attempt to persuade them to allow me to make this page to give Killian the best possible future he and the family deserve.

I really appreciate you taking the time to read their story and would be even more grateful if you could do anything to support Claire & David financially by donating, or even by sharing this page to anybody that you think would be able to donate. To read more about Emmanuel Syndrome, please see here: https://rarediseases.info.nih.gov/diseases/9835/emanuel-syndrome