Hello, my name is Jean and my grandson, Matthew, was diagnosed with Tatton-Brown Rahman Syndrome last year at the age of 13. This is a rare growth condition and very little is known about it.

I would like to raise funds for the Child Growth Foundation to support their work into helping families affected by TBRS. If you would like to help me by making a donation, I will be extremely grateful, thank you.

About TBRS

Tatton-Brown Rahman Syndrome (TBRS), also known as DNMT3A overgrowth syndrome, is a syndrome that produces faster than normal growth both before and after birth, resulting in a severely increased height throughout the childs life. TBRS is very recently confirmed, and it is still unknown exactly how many people it affects, though it is very rare. Current research identifies approximately 150 cases worldwide.

Children born with TBRS are likely to encounter a number of additional symptoms, aside from the overgrowth. For Matthew this includes spinal problems, heart and kidney defects, flat feet, weak muscle tone, dyspraxia, very loose, flexible joints and dental problems. Children with TBRS are also likely to have intellectual disabilities, as in Matthews case, and difficulties with communication and social skills, similar to those of autism spectrum disorders. Matthew has a specific language disorder and sensory processing difficulties that impact on his everyday life.

Because TBRS is still a relatively new syndrome, little is known about the range of symptoms it produces or how to effectively support and manage them. Research is ongoing to increase understanding of the syndrome and each step taken brings a little more hope to families affected by it.

All donations will go towards providing better support and information for families living with TBRS.

Thank you.

About the CGF

The Child Growth Foundation was founded in 1977 by the families of six children with growth conditions in response to reductions in government funding for research into growth conditions. As well as fundraising for research, the charity became a support group, with education and awareness being top priorities.

Today, the CGF provides information, advice and support to families; plus, a range of resources for health professionals. They also fund targeted research to increase understanding of the conditions and improve the symptom management of those living with one.

An update from Jean

Thank you all so much for your incredibly generous support, well over £2,000 raised. That is absolutely amazing.

This page has now closed down, but if you want to support Child Growth Foundation, you can do so by donating through their web page: https://childgrowthfoundation.org/donations/donate/

Again, thank you to all of you.