With thanks to donations and fundraising Child Growth Foundation:

-Supports children, adults and families affected by rare growth conditions.

-Funds research into greater understanding and management of these conditions.

-Raises awareness and understanding of growth conditions, to improve their detection and support their earlier diagnosis.

-Supports health professionals in the optimal diagnosis and management of these conditions.

Our chosen charity is personal and close to our hearts. Our little boy Noah~Thomas was diagnosed with Sotos Syndrome on the 10th of April 2026, 6 days before his 2nd birthday. Noah’s story is remarkable and some days hard. Unfortunately around a year ago me and Noah were confronted in a local supermarket and we were questioned on why Noah was in a pushchair. Noah at the time was 1 and measuring 85.5cm and was unable to walk due to pain in his joints and simply being the same height and size as a 2 year old at just 1 years old. A woman then made a comment of “It’s either the lazy mother, or the stupid child.” When this is simply not the case at all….

Sotos syndrome is a rare genetic condition often caused by a mutation or deletion of the NSD1 gene or chromosome. It is generally occurring in approximately 1 in 14,000 births. We have encountered rude remarks and comments due to the lack of awareness and understanding for this rare genetic syndrome.

In some cases you have a mutation where the mother or father of the baby carries a small mutated gene causing sotos syndrome which is the inherited. There are NO symptoms to carriers and no explanation to this.

In Noah’s case and millions of others there is either a partial or full deletion of the NSD1 gene. Where both parents do not carry the DNA mutation which causes this to happen sporadically.

symptoms include:

Rapid growth, high forehead, long/narrow face, pointed chin, downward slanting eyes, large head circumference, weak muscle tone, skeleton matures faster then normal, learning disabilities, autism, ADHD, seizures epileptic or non epileptic, hypo mobility , hyperlaxity, flat feet, scoliosis, heart defects, respiratory conditions, kidney/renal abnormalities, prolonged birth jaundice, strabismus, astigmatism, hearing loss and tumour risks…

Noah has over come more then I could list and our full story will be written. He is a complete inspiration. He is the gentlest, sweetest kind heart boy I have ever and will ever meet. He lights up every single room he steps into.

Sotos syndrome is currently an unrecognised and silent genetic condition most people including professionals don’t know about.

In multiple appointments we have had professionals say “Oh I haven’t heard of that one I’ll do some research” etc. Even the genetic specialist who diagnosed Noah told us that most professionals wouldn’t have heard of this condition. Noah’s health visitor has been a health visitor for 15 years and has never had the opportunity to work with a sotos syndrome child before however managed to spot this way before any other professional did because she toke the time and put some much energy into our little boy and believed us when we said something felt different!

This is why we want to raise awareness, just because a disability isn’t visible doesn’t mean it’s not there!!!