Running for Rose and raising awareness for rare genetic conditions

Marine Joly is raising money for Child Growth Foundation
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Great South Run 2022 · 16 October 2022 ·

The Child Growth Foundation makes a difference wherever growth is a concern. We are a UK charity focusing on the support, understanding and management of rare growth conditions to improve the lives of children, young people, adults and families affected.

Story

Many thanks for visiting this page.

Our daughter, Rose, has a growth condition called Silver-Russell syndrome.

It is a rare condition: worldwide estimates range from 1 in 30,000 to 1 in 100,000 people. She was born at 33 weeks, weighing 1kg (2lbs) only and was diagnosed shortly after her birth while staying 9 weeks at the NICU (Queen Alexandra hospital, Portsmouth).

The condition is characterised by a very slow body growth - she just turned 3 yo and is 66 cm (26 in) high and weighs a bit more than 6 kg (13 lbs) only..the average toddler at this age is 96 cm (38 in) and about 14 kg (31 lbs). She is surely one of the smallest 3 yo girl in Portsmouth, Hampshire and even the UK...

Feeding problems are very common in Silver-Russell syndrome. A lack of appetite and low blood sugar level make monitoring calorie intake a daily battle. We have to constantly feed her to make sure she has enough energy. As she was 1 yo, we had to prepare up to 14 bottles a day 🍼🍼

Her small size impacts her motor and speech development. At 3 yo she is not able to walk or properly talk yet..she is a clever and very happy little girl though and we constantly need to keep her stimulated! 📚🧸

The condition is very complex and challenging and each case is unique...

That is why I have decided to run 10 miles to raise awareness and support the Child Growth Foundation https://childgrowthfoundation.org/ which helps the research to better understand the conditions, but most importantly helps the children and their families to receive a clinical diagnosis and a corresponding care plan so that no-one faces this alone.

Many thanks in advance for your support :)

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Donation summary

Total
£642.78
+ £103.75 Gift Aid
Online
£642.78
Offline
£0.00

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