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Disclaimer:
The Child Growth Foundation (CGF) has made every reasonable effort to ensure that the contents of this newsletter are accurate, but accepts no responsibility for any errors or omissions. The views expressed are not necessarily those of the CGF and no reference to any product or service is intended as a recommendation. Views and suggestions are those of individual contributors and are not necessarily endorsed by the CGF. Please consult your medical practitioner / healthcare professional for confirmation and/or advice.
I hope you have all had a lovely summer. Once again, 2024 has been a very busy year for the CGF staff, and I am very pleased and immediately want to confirm the delivery and roll-out of a couple of key and exciting projects that I highlighted in previous newsletters: the CGF growth awareness campaign and the first two webinars in the CGF’s GP education programme.
The CGF growth awareness campaign, which has been developed by a leading medical communications agency, with significant input and feedback from many of you, as you may remember, is intended to encourage families to trust their instincts and act upon any concerns they may have about their child’s growth and to ‘Leave no shadow of doubt’. You will soon start seeing the campaign posted in GP surgeries and both mainstream and social media. The CGF is extremely excited about the roll-out of this campaign and we consider it to be a key component in our drive to ensure children with growth conditions are detected, referred, and treated as early as possible. We hope you will approve of the campaign and will be pleased to receive your feedback.
A CGF GP education programme was widely acknowledged as needed, and complementary to the CGF’s public growth awareness campaign. This programme aims to improve GP, and other healthcare professionals, knowledge and und understanding of growth conditions, and inform them of how to respond more effectively to the expressed concerns of families about their child’s growth. The first two webinars: ‘Assessment of Child Short Stature -why it matters’ and ‘Using childhood short stature to diagnose underlying pathology and multisystem disorders’, were brilliantly presented by Professors Helen L Storr and Justin Davies in March and July respectively, as part of GP education events hosted on Pulse365, and available at: childgrowthfoundation.org/hcp-education.
The audience response to the webinars was overwhelmingly positive and appreciative, and the CGF is determined to make these webinars accessible to as many GPs as possible, and to build on their success with the development of other primary growth education materials. The CGF is, for example, already investigating how we may best respond to growth education and information needs of health visitors and school nurses.
We anticipate, and hope, that both these projects outlined will result in a significant increase in the number of families reaching out to the CGF, and we will continue, as always, to strive to provide the best possible information, support, and guidance to all families we support.
Our specialist nurses, Sally and Lisa, are busy, for example, updating and expanding the CGF’s range of educational booklets, factsheets, and infographics. In addition to the soon to be launched new Sotos syndrome booklet that I mentioned in the previous newsletter, booklets on ‘SGA/IUGR’ and ‘Puberty’ are also planned, plus more infographics are also in the pipeline, including infographics providing guidance from parents affected by growth conditions sharing their top tips for other parents.
As I mentioned in the previous newsletter, we think the modernisation and expansion of the CGF website is pivotal to ensuring the CGF can provide the best information and support to families, both pre and post diagnosis. We hope, therefore, when funding permits, we will be able to develop a completely redesigned CGF website. In the interim, however, the CGF will continue, wherever possible, to optimise its content and make improvements to the existing site; the CGF staff have applied their and expertise and skills to significantly expand the site’s resources, both scripted and video.
As also mentioned in the previous newsletter, the CGF had just started to develop its own branded range of storybooks and materials. I am pleased to share that the first storybook, ‘Your Height, My Height’, authored by the CGF’s Laura Roy, has been published and is available for order. I am pleased to confirm that ’My Sotos Story’, a storybook on Sotos sydrome authored by the CGF’s Anthony Leyton-Thomas, will be published soon. I am also pleased to confirm that the storybook ‘Magnificent Max’, which tells Max’s story, from when it was realised he needed growth hormone to when he completed his treatment, will also be available very soon, helping address the challenges presented by, and encourage adherence to the treatment for, growth conditions. Max is a super dog, and he will soon feature in a range of CGF planned materials, including a CGF height chart.
I hope we will have the opportunity to introduce you to Max and update you on many of the other CGF projects at the CGF’s annual convention, which runs from 25th to 27th October. This year’s convention will, as usual, provide you with an opportunity to meet and ask questions of the growth experts, and the expanded programme has been developed in line with your requests and feedback; there will be a programme of round table discussions on a variety of requested topics, and plenary sessions and panel discussions on the mental wellbeing of children and with growth disorders and transition of care for young people. There will also be plenty of time for networking, socialising, and having fun. I hope you can attend, and it would be great to see you there. If you cannot attend the convention, I hope we will have the opportunity to speak to you at one of the CGF’s ‘Virtual Cuppa & Chats’ held virtually, future Information Days, or other CGF Meet Up events.
I look forward to meeting with many of you very soon.
Best wishes to all
Jeff Bolton
Update from Catriona
Charity Manager
catriona.taylor@childgrowthfoundation.org
We’re currently gearing up for this year’s Children’s Growth Awareness Week, running 15-21 September 2024 - an important week for the CGF to raise vital awareness with families with a concern about their child’s growth, to reach families with a diagnosis, and to spread our messaging and resources to healthcare professionals too.
Along with launching our awareness campaign (which we can’t wait for!), we’re also so excited to have a number of individuals and organisations taking part in social media takeovers during the week, alongside our very own nursing team, Sally and Lisa, running a week-long takeover. Keep an eye on our social media channels for these takeovers, but if you miss them, don’t worry! They’ll be shared on our website afterwards at: childgrowthfoundation.org/social-media-takeovers.
Talking of social media, we’re joined TikTok to reach a wider range of audiences - including young people, young adults and parents and carers who we may not reach on our other platforms - to share our new, growing range of short videos on a range of important topics. It’s one of the many steps we’re taking to address key topics that we are often approached about, such as through our Support Line, to bring additional and much needed information, advice and resources to a wider audience. If you’re on TikTok you can follow us here: tiktok.com/@childgrowthfoundation.
Here in the CGF team we get to be involved in an amazing range of projects and activities, all to benefit and support the child growth community. But we can’t do this alone, and we are delighted to get to work in collaboration with a fantastic range of individuals, groups and organisations. A couple of examples being Society for Endocrinology’s affiliated patient support groups and the Overgrowth Syndromes Alliance. As collaborative groups we are working together to raise the collective voice of our organisations, and the people and conditions we're here to support.
We also share our expertise and were pleased to recently support Genomics England and Genetic Alliance UK’s new toolkit for developing accessible information on genetic conditions. They have developed a ‘how to’ toolkit, that the CGF contributed to, that can be used by charities, support groups, patient groups and the NHS to write genetic and rare condition-specific information that is accessible for people with a wide range of requirements.
As a small but mighty charity we’re here to make a difference wherever growth is a concern, and this drives us every day. One of our fantastic trustees shared with me a wee while ago “I came to the CGF for the information, and I stayed for the support” and that really summarised to me the heart of our charity - we’re here as a source of information and guidance, but the CGF is also so much more than that, and we’re so grateful to you all for being part of this special, supportive community.
As always, if there’s anything you’d like to discuss, please do get in touch with me or the team. We’re so grateful to you, the wonderful child growth community.
Our new book: My Sotos Story
by Anthony Leyton-Thomas, trustee
‘Hello, my name’s Shaheda and I’m here in all my glory to tell you all about my life – my Sotos syndrome story…’
My Sotos Story is the CGF’s new children’s book about a girl growing up with Sotos syndrome. It aims to help young kids and their families living with the condition and all it can entail. After the CGF published Your Height, My Height by Laura Roy last year, to help children accept and embrace differences in size, we were lucky to receive funding towards another children’s book, this time about Sotos syndrome. As the father of a child with Sotos and a CGF trustee with some publishing experience, I was asked to write it. An exciting prospect – but a daunting one.
My first thought was that I wanted to be sure the book properly reflected the fact that there is no such thing as a ‘Sotos syndrome child’, and that the condition affects people in different ways, and to different degrees. I’m very conscious that our family’s experience of living with Sotos might be very different from another’s, and I want this book to be for everyone.
Another priority was ensuring that this would be a story that was a pleasure to read aloud. Having read to my four kids over the years, I know that the books we’ve enjoyed together the most have often been the ones written in verse. Rhyme and rhythm help the words flow as you’re reading them, and can help kids learn the story more quickly, so they’re more likely to read along with you. The challenge when writing in verse is making sure it sounds natural and unforced, and there were more than a few occasions when I spent ages staring at an unfinished line thinking ‘what could possibly rhyme with ‘protein synthesis’?
As a chromosomal condition affecting NSD1 – a gene associated with making a protein – Sotos syndrome is quite complex to understand even for an adult, so I tried hard to ensure that the book described the science behind Sotos in a way that was accurate but would make sense to a five or six-year-old. Which is far from easy, trust me! Luckily, we had Sotos specialist Dr Kate Tatton-Brown on hand to make sure we got our science straight.
And finally, I was determined to ensure that it would be a decent children’s book in itself, so that someone could enjoy it, and learn something, even if their family wasn’t affected by Sotos syndrome. In my experience, a lot of ‘issue’ books tend to be held to lower standards that most children’s publishing – I wanted My Sotos Story to be able to hold its own against work by ‘real’ authors.
So to recap: a rhyming story for young children that accurately addresses the genetics and impact of Sotos syndrome, doesn’t make unhelpful generalisations, and is fun for anyone to read. Easy, right? I hope you like it.
My Sotos Story will be go live to pre-order on Sotos Syndrome Awareness Day, 6 September. Order your copy for £6.99 at childgrowthfoundation.org/my-sotos-story.
Update from Sally, Growth Nurse Specialist
sally.majid@childgrowthfoundation.org
By the time you read this we will have delivered five Virtual Cuppa & Chat support sessions since we launched the event on Children’s Growth Awareness Day 2023.
We plan to have a virtual support session every other month, alternating between daytime and evening, which hopefully makes it accessible for everyone who would like to attend. Get details on upcoming Virtual Cuppa & Chats on our website: childgrowthfoundation.org/virtual-cuppa-andchats.
The aim of these events is for parents to come and connect with other families, to share experiences and support each other, with the additional opportunity to ask the CGF questions.
But our Support Line is always available so please don’t hesitate to get in touch either via email, phone or our online contact form and we will do our best to help you.
We need your feedback so we can improve the way we deliver our support. If you have accessed our Support Line, or attended a Virtual Cuppa & Chat, please let us know how we did by completing these short feedback forms:
Virtual Cuppa & Chat feedback form: Support Line feedback form:
Convention is always my favourite time of the year, watching the children enjoy themselves and seeing families connect is fantastic, I’m looking forward to a good boogie on the dance floor with everyone and hopefully not spending all my money on the tombola! Lisa and I will be putting on more support sessions, so please book a slot if you’d like to have a confidential chat with us.
We cram a lot into our busy working week, doing our best to progress lots of exciting projects, answering the phone and emails, ensuring we stay connected with the rare disease community and continually trying to update our resources and information. I can’t tell you how rewarding it is when a project or piece of work starts to take shape and we are able to share it with you all.
Our Adrenal Insufficiency Support Pack is now available to order, so please get in touch if you would like one by emailing support@childgrowthfoundation.org
If you have already ordered one, please let us know what you think as this helps us to plan how we might adapt and produce packs in the future, through our Adrenal Insufficiency Support Pack feedback form: https://forms.gle/bzj9YpjW8JV9GyFM7.
We are incredibly grateful to our Medical Advisors and team of young people and young adults who have helped us to produce and review a new transition guide for Silver-Russell syndrome. Transition: Silver-Russell Syndrome is now available to read and download at: childgrowthfoundation.org/transition-srs.
A large percentage of our calls and emails to the Support Line are from families who have general concerns about their child’s growth.
Whilst we have some information on our website about growth, including the CGF guide to childhood growth booklet, we have been busy working on a dedicated webpage with information on childhood growth, and how to address concerns about your child being too small or too tall.
We have launched the digital guide A parent carer guide to concerns about a child's growth.
Containing important information for parents and carers and GPs too, this guide aims to help decide if further assessment is needed for short or tall stature, and help you to prepare the information that your GP may ask for. Read the guide in full here: childgrowthfoundation.org/parent-carer-guide.
Our new Healthcare Organiser is here! We've produced this organiser to be used by families wishing to keep a personal record of their child’s medical history, current needs, and health services input.
We hope this record will help families keep track of their child’s progress and changing medical needs and support them in the conversations they have with their medical team.
To view online, download a copy or print your own visit our website at: childgrowthfoundation.org/healthcare-organiser.
Our new Sotos syndrome information booklet is progressing along nicely. This is large piece of work which sometimes takes a bit longer due to the robust processes we follow ensuring it is reviewed by our Medical Advisors and importantly our families and young people affected by Sotos. I’m confident that by the next edition of this newsletter we will have shared it with you, and I’ll be asking for more feedback ;-)
Update from Lisa, Paediatric Endocrine Nurse Specialistlist
lisa.hill@childgrowthfoundation.org
As we fly our way through the year, there has been lots of exciting projects and activities going on.
We had our first Youth Ambassador meeting in May and they have some brilliant ideas of ways to support our young people going forwards so watch this space! We have plans for further meetings throughout the year.
We are still taking applications so if anyone aged 16-25 years old with a growth condition or concern is interested please take a look at the ‘Get involved’ section of our website for more information or email us at volunteer@childgrowthfoundation.org and ask for a Youth Ambassador information pack.
If you don’t think joining the team is for you but you have ideas on what you think should be shared with other young people please do get in touch with us at ya@childgrowthfoundation.org
I joined Catriona and researchers from the Queen Mary University of London who shared their findings from their study in child growth and development in East London. We had the opportunity to share with families there a presentation on how the CGF offers support and were able to share the resources and information we have to offer. Events like this are so important to help us spread the word and network with healthcare professionals and families and we always love getting to meet so many different people.
There are now two new short videos on mid-parental height (blue QR code) and bone age x-rays (yellow QR code) available on our YouTube channel:
youtube.com/@childgrowthfoundation.
Hopefully by the time you are reading this, there will be additional videos available on growth hormone provocation testing. Getting the information across in under one minute - to fit with the under one minute settings needed for YouTube Shorts - has proven challenging for this one… there’s just so much to say on the topic! If you have any ideas on content that you would find useful in the videos please do let us know.
As we head towards October and plans for convention are well underway I’m looking forward to seeing many of you there. Please don’t hesitate to come and chat to me or Sally when you’re there, or sign up for the one-to-one nurse sessions or Group Virtual Cuppa & Chat with us. As always, if there’s anything you would like to get in touch about please contact me at lisa.hill@childgrowthfoundation.org or access our Support Line (details overleaf).
Our Support Line
Our nurse led Support Line is available to anyone affected by a growth condition and those concerned about their child’s growth. We are here to listen and support you.
By contacting the Child Growth Foundation Support Line you are providing consent for us to collect, process and store your data to provide you with the information or services you are contacting us about. To read our full Support Line Privacy Statement visit: childgrowthfoundation.org/supportlineprivacy.
Peer support
Alongside our Support Line and our range of support, information, guidance and advice, we also facilitate a range of peer support systems, for parents and carers to be able to support each other.
Peer Support Groups
Our inaugural Northern Ireland Peer Support Group for parents and carers of children with Hypopituitarism have had a number of great meetings already, and you can find out more about joining on our website: childgrowthfoundation.org/mphd-support-group-ni.
There are now groups being set up in both Oxfordshire and London for parents and carers of children with a diagnosed growth condition or a suspected growth condition. We’ll have more details to share in our next newsletter, and you can also keep up to date on our Peer Support Groups page on our website: childgrowthfoundation.org/peer-support.
Facebook groups
We also have a number of closed Facebook groups enabling peer-to-peer support in the child growth community, providing a chat forum for parents and carers of children with a diagnosed growth condition and their families, for adults with the conditions themselves, and for those working towards a diagnosis: childgrowthfoundation.org/facebook-groups.
We’re so grateful to the following fifteen experts, who are the CGF’s Medical Advisory Committee.
They provide expert guidance to the CGF team and get involved in a range of projects with our charity to support children, young people, families, and fellow healthcare professionals.
Convention 2024
The convention countdown is on! Only a few more weeks and then convention 2024 will be here! It’s such a special event in the CGF calendar of learning and support for families affected by rare growth conditions and concerns.
You can join us for the Saturday daytime where again we’ll be running childcare led by experienced providers you can book ,and with extra time planned in this year for those who’d like to network and socialise with others. Or you can make a weekend of it and join our Friday and Saturday evening activities too. Booking is open at: childgrowthfoundation.org/convention-2024.
Members booked to attend convention will receive a free member goody bag at the event and for 2024, thanks to a grant received from the People’s Postcode Lottery, we are offering free childcare to members. If you’re not a member but would like to take advantage of free childcare places for members in 2024, you can add membership to your event booking form.
With a range of topics and sessions planned for our Saturday daytime we have specific sessions for the below conditions, with our draft programme shared here (subject to change until the final agenda is confirmed).
-Small for Gestational Age (SGA) | Intrauterine Growth Restriction (IUGR)
For those making a weekend of it we will have family friendly activities taking place on the Friday evening and our dinner and entertainment on the Saturday evening.
Last year we had the theme of Halloween on the Saturday night - as the theme was so popular, and as this year’s convention is being held over the last weekend of October, we’re excited to again have a Halloween theme! Fancy dress is not compulsory but is very much welcomed for children and grown ups who want to join in the spooktacular fun.
Donations of new, unopened raffle and tombola prizes would be very much appreciated!
Meet Ups
Wow, what a wonderful couple of Meet Ups we’ve had this year!
In February 58 children, young people and adults met together at Gulliver’s Land in Milton Keynes for a fun filled day of adventure and time with other families affected by growth conditions and concerns, hosted by staff member Laura and Vice-Chair Jessica.
The day was a brilliant success with Laura sharing “The day was enjoyed by many families in our growth community. We are looking forward to arranging many more get togethers!”. Jessica shared it was “a fabulous day having fun, hanging out with families across the growth community. It was a successful first trip!”
In July families joined together at Noah’s Ark Zoo Farm for a lovely day out, for our second Meet Up event. Jessica hosted the day in North Somerset, and was joined by a great group of families enjoying time together in a fun, family friendly location.
After the success of these first two events we’ll be holding more Meet Ups in the future at a range of venues and locations across the UK. To find out more visit our Meet Ups webpage at: childgrowthfoundation.org/meet-ups.
We would love to hear from people who would be interested in supporting us to organise a Meet Up event in your area – please get in touch with us at volunteer@childgrowthfoundation.org
Gulliver’s Land, Milton KeynesFebruary 2024
Noah’s Ark Zoo Farm, North SomersetJuly 2024
Studies and surveys
At the CGF we are often contacted by organisations, healthcare professionals and academic institutions who are conducting surveys, studies and research projects, to drive progress and advancements relating to our child growth community.
These can range from rare disease questionnaires, projects looking at related neurodevelopmental factors and research in to treatments for growth conditions, and many more. Where appropriate, we will share these with our community on our website, our social media channels, by email and/or here in CGF News.
Please see the latest opportunities to take part below:
What are the neurodevelopmental, behaviour and feeding issues in children and young people with Silver Russell Syndrome?
Researchers at Aston University are working with Birmingham Women’s and Children’s Hospital to better understand the needs of children and young people with Silver-Russell syndrome (SRS).
The research team are inviting parents/carers of children aged 3-16 years with a diagnosis of SRS to take part in a questionnaire study about neurodevelopmental, behavioural, and feeding characteristics of SRS.
This study will help to better understand the specific needs of children with SRS, so that children and families can be better supported. All families that take part will receive a £10 voucher as a thank you for their time. Find out more at:
King’s College London and Pfizer are looking at the impact of long acting growth hormone with adherence, with the project aimed at children aged 3-16 years old who have growth hormone deficiency and have weekly growth hormone treatment. Contact jessie.1.clarke@kcl.ac.uk to find out more.
For children who use an injection device to administer medication to treat a health condition
Intelligent Fieldwork are working with their client, a health communications company, on a study for children who use an injection device to administer medication to treat a health condition.
They are looking to speak with children and their parent/guardian who may be interested in taking part in this face to face usability study (a usability study involves participants reading and following a set of instructions for a medical device and providing their feedback).
They want to ensure that a new information leaflet can be understood and followed by everyone, including children of all ages and reading ability. This is not a clinical study and you nor your child would be required to take any medication, just to give your time and opinions. Find out more at:
Alongside sharing opportunities to take part, we also share updates we receive with outcomes of projects, which have often been made possible thanks to the kind contributions our community make by taking part. We have a dedicated page on our website sharing latest opportunities and outcomes, at:
Do you have a study, survey or research project to share?
If you are the organiser of a study, survey or research project you would like to share with our community, please contact our team at research@childgrowthfoundation.org and we can share our request form with you to complete.
Fabulous fundraisers!
THANK YOU to River Luders who raised £450 for the CGF through his half marathon challenge fundraising in April.
THANK YOU Georgia Bell for raising over £2,100 for the CGF through her London Marathon fundraising!
THANK YOU to Nikki and Dec for their Stratford 'Fun' Triathlon fundraising for the CGF, in support of their niece Elodie who has SilverRussell syndrome, raising over £1,700!
May walking challenge supporters
THANKS SO MUCH to Thomas who took on the May Walking Challenge for the CGF and raised £210!
THANKS SO MUCH to Yasmin who completed the 50 mile May walking challenge in support of the CGF, despite being on crutches, and raised over £170!
CGF members
Notice of our AGM
Join our Board of Trustees at our Annual General Meeting (AGM) at 7pm (GMT) on Monday 16th December 2024.
At our AGM we’ll share important reflections and updates from the CGF as we report on the past year and look ahead to our upcoming plans for our charity. Please note this is a change to the previously advertised date.
The AGM will be held on Zoom to maximise the opportunity for attendance across the UK and for our international members to be able to join too. Full, paid members of the CGF have voting powers at this meeting, with community members and non-members also welcome to attend as observers.
To register to attend for free please contact info@childgrowthfoundation.org.
Members area of website
We have built a dedicated MEMBERS AREA of our website. Along with our wider website full of information, resources, guidance and support which is accessible to all, we have this members area available exclusively to full, paid members of the CGF.
We will contacting active members soon by email about how to access login details for this, connected to your email associated with your membership. If you are a member and we don’t have your email address please contact us at info@childgrowthfoundation.org for us to add this to the member system on our website.
Community membership
If you have family, friends or colleagues who aren’t looking to be a full member at this present time but would like to be a part of our CGF community, they can join our charity as a free community member at childgrowthfoundation.org/register.
As part of our community membership they’ll receive our email communications and updates including a digital copy of this bi-annual CGF Newsletter emailed to their inbox.
Renewing membership
Thank you so much to our members for your wonderful support. This support you provide through new or continued membership helps us deliver our range of services to families affected by rare growth conditions and those seeking a diagnosis, to support healthcare professionals, and to raise vital awareness.
There are a number of ways you can pay your membership:
By Standing Order
Account Name: Child Growth Foundation
Sort Code: 23 05 80
Account Number: 24218095
By card
Via our website: childgrowthfoundation.org/membership.
By cheque
Please make cheques payable to: Child Growth Foundation and post to us at:
Child Growth Foundation c/o Kinnair Associates Limited Aston House Redburn Road
Newcastle upon Tyne NE5 1NB
By Direct Debit
You can set up a direct debit either by emailing laura.roy@childgrowthfoundation.org, by using the following link bit.ly/cgfdirectdebit or by scanning the QR code, right.
For any queries regarding membership please contact laura.roy@childgrowthfoundation.org.
Supporting our work
Becoming a member
When you become a full, paid member of the CGF you are not only make a real and lasting contribution to our charity’s work but there are also various benefits to you, including:
▪
A printed copy of this bi-annual newsletter, CGF News, delivered to your door
Member-only benefits for convention including early bird booking and member goody bag
Access to the members-only area of our website ▪ Voting powers at our Annual General Meeting ▪ Early access to a number of new CGF resources before their release
Full membership costs
£25 a year to UK residents ▪
£30 for those living overseas
Find out more at: childgrowthfoundation.org/membership
Thanks to a talented supporter of the CGF, we have a beautiful range of cards available to order in support of the CGF. Available to send as e-cards on Don’tSendMeACard.com at: dontsendmeacard.com/ecards/charities/child-growth-foundation (blue QR code below), and to order as printed cards on Making A Difference Cards at: gb.makingadifference.cards/supporting/child-growth-foundation (yellow QR code below).
Updates from our community Elodie’s story
By Elodie’s mum, Laura
Silver-Russell syndrome
Elodie was diagnosed at 5 months with RSS (Russell-Silver syndrome) Matupd7 after a tumultuous time of slow growth, eczema, and poor and constant feeding.
She's now just about to turn two and has had the most tremendous journey. With visits from physio, speech and language for feeding and now communication, early learning support, endocrinology, allergists and orthopaedics, plus so much more, we have been so lucky for such great support.
Elodie had an NG tube from just before 1 until April this year. She now has a Mickey button and has gone from strength to strength. She has physical motor skill delays but is as sharp as a button.
She learned to bum shuffle rather than crawl and is a speed demon on that bottom! This makes the transition to walking slightly harder but we will get there eventually.
She signs a mix of Makaton and British Sign Language and is quite the character. She doesn't let anything hold her back, and has us all wrapped around her little fingers.
We are waiting for growth hormone to arrive to complete this stage of normal.
Our normal is so different to her peers, and was never what we expected during pregnancy.
It wasn't until 36 weeks in pregnancy when we found her breech and measuring small, so we didn't have a lot of time to prepare.
After a C-section at 38 weeks, and 5 days at hospital, Elodie was born at 5lbs 14oz and was such a tiny dot of a thing.
She had lots of scans done to determine why she was small but it wasn't until our paediatrician sat me down at 5 months that we truly knew it wasn't anything we could control.
Early intervention has been crucial for Elodie to thrive.
We've had strict feeding plans in place, with supplemented high calorie milk making the biggest difference. Without the support of the CGF, and the convention we attended back in October, we would be lost.
Information is critical in finding the best treatment plan and the CGF community allowed us to know more than some of our doctors.
We have been armed with data that has made a difference, such as the British Society for Paediatric Endocrinology and Diabetes (BSPED) document recommending early growth hormone!
Our family has fundraised for the CGF and it has been one of the most fulfilling experiences. It makes sense to help out where we can, to ensure support for others.
Update on James
By James’ mum, Laura
Silver-Russell syndrome
Moving on up
It sometimes feels like we’ve climbed a mountain since we last gave an update on James, but I’m pleased to say that despite the challenges, we made it to the top! When I say a mountain, I’m referring to his GCSEs! It’s been an intense school year and since the first day he started in year 11 the pressure ramped up, starting with work on non-examined assessments for his Food Tech and Drama and the pressure didn’t stop all year until the end of his GCSEs.
To say it was hard work is an understatement but with lots of support, guidance and encouragement, James achieved passes in all his GCSEs and we’re now firming up his plans for college. We are so immensely proud of how far he has come and what he has managed to achieve.
Just to give a bit of background to those of you who may be new to CGF, James was born eight weeks early weighing 2lb 6oz. We’d had early scans that showed soft markers for other genetic conditions, so I was receiving regular scans. It was during one of these that the midwife couldn’t find a heartbeat, so James was delivered by emergency caesarean. His dad almost didn’t make it in time and arrived just to see me whizzing past on a hospital bed for the delivery!
James was in SCBU for eight weeks, being discharged on the day he should have been born, but was still only just over 4lbs, suffered with Gastroesophageal reflux disease (GERD) and didn’t feed well at all. To cut a very long short, we weren’t home for long and James was readmitted to hospital as failure to thrive and had a nasogastric tube put in, which was later replaced with a gastrostomy and GJ tube (he was fed into his jejunum). We lost count of how many different milk formulas we tried and finally found one designed by Great Ormond Street that he could keep down.
We spent the first few years in and out of hospital and he was diagnosed with RSS (Russell-Silver syndrome) Mupd7 by Professor Karen Temple when he was 18 months old. He finally started to put on weight (still not eating) and started to become a little more stable.
James was born at the end of August, so when he started school he had only just turned 4 years old. He could barely walk, could only say a handful of words, didn’t eat, was tube fed and was on lots of medication throughout the day, as well as a GHT injection each night. When he moved from nursery to primary school, we had a transition meeting and there were 14 people in the meeting including the primary school head and deputy – so they were very prepared for him and we were very lucky that they were always very supportive. Also in attendance were physio, OT, SALT, Educational Psychologist. James had what was then called a Statement - now an Education, Health, Care Plan (EHCP) - from the very beginning and this meant he could attend mainstream with additional help.
A big turning point for us was when James was prescribed cyproheptadine to improve his appetite and in June 2019 he finally has his JPEG and button removed as he was eating enough to maintain his weight. He continued to be selective with the food he’d try, and as he got older he continued to do well with his eating but we noticed his eating was not improving as much as we had hoped.
Secondary school was another big step and after significant planning and transition, he only spent six months at school and we then went into lockdown. Like all young people, Covid interrupted his schooling for a couple of years (he did start going back into school ahead of everyone else because he had an EHCP) and before we knew it he was having to choose his GCSE options. During this time James was having a 10 weekly Prostap injection to delay puberty to give him a longer window for growth and we stopped this when he was around 14 years old.
James settled well at secondary and he was happy but it was much harder for us because of the lack of communication from school. It was during this time that we really noticed James’ neurodiversity because we couldn’t provide as much scaffolding and he found it difficult to socialise and make friends. He was assessed by the Social Communication and Autism Spectrum Service at Great Ormond Street and diagnosed with Autism Spectrum Disorder in December 2022.
James continues to have his daily GHT injections and cyproheptadine, but he no longer needs any other medication and he will try new foods in new places - this holiday, moules marinere was a favourite! He turns 16 soon (two weeks before starting college!), and its at these milestones that we reflect on our journey.
We are often asked by friends and family how did/do we manage, but we do, we all do, because we will do whatever it takes to get our special young people the support they deserve and need to shape their future.
The reason I share James’ journey is because I hope it helps other families who have young children and are struggling, that there is hope and things do get better. I think we’ll always have additional challenges, but that’s what makes it even more of an achievement when we navigate and overcome them. It is what makes our children and young people so special. Next step college...
Update on Robert
By Robert’s dad, Steve
Growth Hormone Deficiency
Life moves on apace in the George households.
Robert is enjoying his new job at Cushman & Wakefield and is beginning to make a name for himself (in a positive way) at the organisation.
He is nominally based in Birmingham but seems to be visiting sites all over the country. Luckily he likes driving but he is thinking about updating his car for something a bit newer and also larger as son William continues to grow (thankfully).
We recently went on a family holiday to Cornwall that was fantastic and enabled us to spend even more time with William who turns two at the end of August. William is definitely Robert 2.0.
His main adage seems to be ‘Why walk when you can run?’. He loves books, particularly Thomas the Tank Engine and anything with containing tractors. In fact ‘tractor’ was one of the first words he learnt as he sees so many driving down the lane where they live. He also loves kicking a ball around although he will shortly be migrating to a rugby ball which is obviously more difficult to kick around.
Robert is still working out in his home gym and continues to go running around his local country roads and fields. He intends to seriously take up Ironman triathlons, so looking ahead I see more opportunities for CGF fundraising.
Work continues on their property. The roof was sorted out earlier in the year so they can now concentrate on the inside in the knowledge that renovations won’t get wet.
Robert and Emily both turned 30 this year, Robert in March and Emily earlier in July, and as I write a party has been planned to which we are all looking forward.
Ellie and Terry’s Rare Disease Day Instagram takeover
Thanks so much Ellie George who ran a super takeover day on our Instagram earlier this year, for Rare Disease Day on 29th February, sharing her son Terry's story.
Catch up on the takeover through the QR code, or at:
Often families just starting growth hormone treatment contact the CGF for support, wanting to know how best to introduce this new normal to their child.
We offer suggestions and resources to help them navigate this journey as smoothly as possible, providing as much or as little support as they want for as long as they need us.
We would love to develop a short video showing supporters of the CGF talking about their experiences of doing daily or weekly injections. This would really help new families to see a positive experience of how you manage your treatment.
Can you help us by filming some short footage to share with us and our community? It could be you or your child chatting about what your routine is, maybe giving the injection, a child injecting themselves, or even the child/young person receiving their treat at the end.
Whichever part of your routine you and your child would be willing to share that might help other families. If preferred, the video does not need to include faces on the screen.
Please get in touch to find out more at support@childgrowthfoundation.org and we can share more information with you including our short consent form.
Child Growth Foundation, c/o Kinnair Associates Limited, Aston House, Redburn Road, Newcastle upon Tyne NE5 1NB
Charity registered in England & Wales
Charity number: 1172807 | Company number: CE010204
