Who can beat them?

Who can beat them?

BBC2’s Eggheads programme is on the lookout for a team. Do you have what it takes to beat them? Do you think we could put together a winning CGF team?

If you have enough people to make up a team, the details are below…

Research Awards 2018

Research Awards 2018

The Child Growth Foundation has launched ist latest round of Research Award. The Award is for research projects that will directly enhance the health, psychological wellbeing and education of those affected by growth conditions. Grants cover salaries/stipends and research costs directly associated with the project. The next round is now open. For more information visit: http://childgrowthfoundation.org/2018-research-awards/

Research Funding Update – 2013

Research Funding

Introduction

The Child Growth Foundation (“CGF” or “Foundation”) aims to “promote and fund research into the causes and cure of growth and endocrine disorders, and publish the results”. The Foundation has been actively pursuing this aim for many years by funding numerous research projects. However, at recent Annual General Meetings, some criticism has been levelled at the trustees for a lack of transparency of the procedures by which grants are awarded and by which the subsequent results are evaluated and disseminated. Consequently, at the last meeting of the management committee, I agreed to review the current procedures to ensure that we are adopting best practice.

Source of funding

In recent years, most of the funding for research has been taken from unrestricted funds which are generated from various sources such as membership fees, donations and income generated from CGF Products. However, the CGF has also received donations from pharmaceutical companies to fund specific research projects. These donations are classed as restricted funds and cannot be used for any other purpose. The research grants are awarded, administered and evaluated by the Foundation on behalf of the pharmaceutical company. Research grants represent a significant proportion of annual expenditure and have exceeded fifty per cent of total expenditure in some years.

What do we fund?

The majority of recent grants have been awarded to universities or hospitals in the UK and projects have typically fallen into one of the following categories

  • Fundamental research such as identifying a specific gene that is responsible for a particular growth disorder (e.g. Russell-Silver and Sotos Syndromes)
  • Studying the long term consequences of an intervention (e.g. Growth Hormone Therapy)
  • Investigating the behavioural and psychological effects associated with growth disorders (e.g. premature sexual maturation and Sotos Syndrome)
  • Providing funds to allow families to take part in research studies (e.g. travel expenses)

In some cases, grants awarded by the CGF are used to supplement funding from another source or to support one aspect of a much larger research programme. Projects will only be considered if they accord with the aims of the CGF and will be favoured if they are of potential benefit to members with one of the growth conditions supported by the charity.

 

The decision process

Requests for funding are received by the CGF on an ad hoc basis and are usually discussed at meetings of the management committee. However, as these meeting are held at intervals of approximately six months, it is sometimes necessary for requests to be circulated to the trustees by email. The funding decision is taken by a vote of the trustees on the basis of a simple majority and in most cases the decision is unanimous.

CGF staff then inform the applicant of the trustees’ decision and, where successful, place an agreement with the institution. The principal investigator is required to confirm that ethical approval has been obtained (where necessary) and that copies of all publications arising from the work will be made available to the CGF.

The CGF will take steps to protect intellectual property when it is considered that the results of the project could be exploited financially.

Presenting the results

Successful academic research will typically be presented at conferences and published in peer reviewed journals. On-line access to recent academic publications is often restricted with relatively expensive subscriptions required to view the full papers. However, specialist knowledge is usually required to understand these papers. It is therefore essential that the results of research projects are presented to the membership in a format that is accessible to the lay person. This is typically achieved by inviting the principal investigators to present their work at the annual convention or to write an article for the newsletter. They are also required to submit a report with all invoices so that the CGF staff can confirm that satisfactory progress has been made.

It is important to distinguish between fundamental research and other projects such as epidemiological investigations. Research is by definition, an investigation of the unknown and positive outcomes can therefore not be guaranteed. However, it should always be possible to draw conclusions from the collection and analysis of a data set.

The future

The management committee considers that the current protocols associated with research funding are robust and that the CGF has obtained good value for money in most cases. However, there is always scope for improvement and the following measures will be adopted for future projects

  • The management committee will appoint one trustee to have responsibility for overseeing research projects.
  • When the value of a research grant exceeds £5k or when the project is of high profile, a trustee and/or a member of the CGF staff will hold regular review meetings with the principal investigator or their nominated deputy as specified in the research agreement.
  • A report will be included in each newsletter giving an update on all current research projects. This will also be made available on the CGF web site.
  • The management committee will be more proactive in the funding of research projects and will seek to identify topics that are of particular interest to the CGF. Suggestions from members would be most welcome. Requests for proposals will be announced and it is hoped that professional organisations such as BSPED will be prepared to assist the CGF in publicising and evaluating these proposals.

 

Current and recent projects

The following projects have received funding from the CGF in recent years.

 

Title: Investigation into the role of growth hormone on higher functioning in children

CGF Reference: GR07/01

Principal Investigator(s): Professor Mehul Dattani

Institution: University College, London

Funding Level: £322,000 (funding from Novo)

Duration: 2007 – 2012

Comments: An investigation of the effect of GH on brain development in children. The results showed that children with hypopituitarism displayed behavioural and cognitive difficulties and poor sleep patterns. These problems were linked to brain abnormalities as seen on MRI scans. The research has been published widely.

 

Title: Preterm Growth References

CGF Reference: GR07/02

Principal Investigator(s): Professor Neena Modi

Institution: Imperial College, London

Funding Level: £73,000

Duration: 2007 – 2012

Comments: The production of growth charts for preterm babies born at up to 34 weeks gestation. The preliminary data were presented by Professor Tim Cole at the Annual Meeting of the Royal College of Paediatrics and Child Health in 2011

 

Title: Behavioural and psychological problems in children with exaggerated adrenarche

CGF Reference: GR10/01

Principal Investigator(s): Dr Jeremy Kirk and Dr Gillian Harris

Institution: Birmingham Children’s Hospital

Funding Level: £60,000

Duration: 2010 – 2013 (not yet finished)

Comments: The project is progressing well and early results indicate that some patients with early puberty may display atypical eating behaviours and may have an increased risk of psychological disorders such as anxiety, depression and aggressive behaviour.

 

Title: Purchase of 3D body scanner for hospital

CGF Reference: GR10/02

Principal Investigator(s): Professor Jonathan Wells

Institution: University College, London

Funding Level: £17,000

Duration: March 2011

Comments: Donation of body scanner

 

Title: Ethnic differences in lung function in children

CGF Reference: GR10/03

Principal Investigator(s): Professor Janet Stocks & Dr S Lum

Institution: University College, London

Funding Level: £4,200

Duration: October 2010 – September 2011

Comments: An investigation by way of body composition studies to facilitate early diagnosis and treatment of lung disease in children

 

Title: Early identification of childhood obesity

CGF Reference: GR10/04

Principal Investigator(s): Dr William Johnson

Institution: Bradford Hospitals NHS Trust

Funding Level: £6,163

Duration: Late 2010 – early 2011

Comments: Stage 1 of study into possibility of creating a prediction app (completed)

 

Title: Early identification of childhood obesity

CGF Reference: GR11/01

Principal Investigator(s): Professor Noel Cameron & Professor John Wright

Institution: Bradford Hospitals NHS Trust

Funding Level: £100,000 (approx.)

Duration: January 2011 – December 2012

Comments: Stages 2 and 3 – development of a prediction app. See report in this newsletter.

 

Title: Patient choice and “value added” items: influences in adherence with GH therapy

CGF Reference: GR11/02

Principal Investigator(s): Dr Jeremy Kirk

Institution: Birmingham Children’s Hospital

Funding Level: £20,000

Duration: February 2011 – December 2011

Comments: An investigation of the difference in growth outcomes in children offered a choice of GH therapy and those who were treated in hospital. The results show that the type of GH and the method of treatment had no significant effect on height SD, compared with children receiving no treatment after one year.

 

Title: Which early risk factors should be used to identify a baby’s risk of obesity?

CGF Reference: GR11/03

Principal Investigator(s): Dr Thomas Willis & Professor Mary Rudolf

Institution:  Leeds General Infirmary & University of Leeds

Funding Level: £10,703

Duration: 3 months in 2011

Comments: An investigation of the factors that may predispose babies to obesity in later life. Factors such as parental obesity, weight centile, infant weight gain and smoking in pregnancy were all considered to be useful factors in the development of an obesity risk tool for use by health professionals.

 

Title: Adolescent obesity – from prevention to surgery

CGF Reference: GR12/01

Principal Investigator(s): Dr Buchanan and Mr Desai

Institution: Department of Paediatric Surgery, King’s College Hospital, London

Funding Level: £2,000

Duration: April 2012

Comments: Support for a workshop and symposium.

 

Title: Summer internships

CGF Reference: GR12/02

Principal Investigator(s): Prof Noel Cameron

Institution: Centre for Global Health and Human Development, Loughborough University

Funding Level: £4,680

Duration: July – August 2012

Comments: Support for an application to British Heart Foundation for financial support in respect of a project to determine the effectiveness of interventions designed to prevent overweight and obesity in pre-adolescent girls.

 

Title: A randomised study of two anti-thyroid drug treatment regimes in young people with thyrotoxicosis

CGF Reference: GR12/03

Principal Investigator(s): Dr Tim Cheetham

Institution: Royal Victoria Infirmary, Newcastle upon Tyne

Funding Level: £20,000

Duration: November 2012 – November 2017 (but CGF only funded first 2 years)

Comments: Study started in 2004 and funding is needed to allow study to continue and hopefully complete so providing useful and novel data in a substantial number of children with a rare disorder.

 

Title: Long term effects of GH therapy

CGF Reference: GR12/04

Principal Investigator(s): Professor Gary Butler

Institution: Institute of Child Health, London

Funding Level: £22,300

Duration: Late 2012 – 2013 (not finished)

Comments: An investigation into the long term effects of GH therapy as part of the European SAGHE study.

 

 

 

Title: Metabolic outcomes in RSS

CGF Reference: GR12/05

Principal Investigator(s): Dr Renuka Dias

Institution: University of Birmingham

Funding Level: £5,000

Duration: Nov 2012 – Jan 2014 (not finished)

Comments: Grant was made to help with patient expenses for travel to Birmingham.

For more information about any of these projects please contact Ros Chaplin or Simon Lane.

 

 

 

Central Precocious Puberty and How It Affects Our Lives

Central Precocious Puberty and How It Affects Our Lives

When Holly’s daughter entered early childhood, she noticed puppy fat around her daughter’s breast area. After much discussion, Holly and her partner decided to check it out. Little did they think that at 18 months, their daughter would be diagnosed with the onset of puberty. But this would not be the only diagnosis their family would receive.

Four months into our relationship myself and my now husband found out we were expecting another bundle of joy. Already parents to two girls each from previous relationships, at our 20 week scan we knew that our little baby was going to be another girl. This was confirmed by the sonographer and we were elated. Due to already having four girls we knew exactly what treats were in store for us and what to expect. Well, this is what we thought…………

Our daughter was born in March 2011 and we were simply over the moon. Weighing a healthy 8lb 10oz she was a normal chubby, bouncing baby girl and nothing seemed out of the ordinary. As she grew and started to become more active, her body frame started to slim down leaving her chubbiness behind. This is when we noticed what we thought was puppy fat around her breast area. Chatting to my husband and family members with daughters, it became apparent that maybe it was worth getting her checked out by a doctor.

Initially the doctor was not concerned but, as precaution, sent us along to the endocrine consultant at our local children’s hospital. We were not told anything by the GP just that he thought it was a condition called ‘Thelarche’ which is the onset of female breast development. We didn’t really think anything of it and thought maybe it was extra oestrogen that was exchanged at the time of our daughter’s birth.

When we were greeted by the consultant she weighed our daughter and also took her height. She agreed that our daughter was over the percentage she should be when it came to both of these measurements and quickly discussed a condition called Central Precocious Puberty. It wasn’t a long discussion more a passing comment and booked our daughter in for the following week to have blood tests to check her LH and RH levels to determine if she had the onset of early puberty.

This was such a distressing thing for her to go through at the young age of 18 months; however, we are so glad that we went with our gut instinct to get her checked as 5 weeks later she was diagnosed with the onset of puberty.

We were so devastated and of course started googling the condition and reading horror stories of how tumours pressing against the pituitary gland could be the cause. After the diagnosis, our daughter started hormone injections every 28 days and was sent for an MRI scan and a scan on her uterus.

This time for us all, as a family, was heart wrenching waiting to hear the results felt like weeks not days. The results came back and nothing showed up on the MRI; however, her uterus was the size of an eight-year- old girl. More bone scans were done on her wrist to check her bone development and yet again proved to be older than her years.

Our daughter is now 5 years old and is doing great, still visiting our local hospital for hormone injections every 28 days and has built up a great relationship with the endocrine nurses, she has almost become desensitised to the injections now and takes it in her stride. I tell her she has them because she is special and to keep her little. She does, however, still continue to have mood swings like a pre-menstrual teenager. She can lash out and has real trouble sleeping at night, which appears to be a side effect from her hormone medication.

She needs personal hygiene care during the night and can show some teenage girl traits; greasy hair, outbreaks of spots and body odour. Pubic hair has also become prevalent as time has gone on.

This condition has been hard to get a grasp of. There isn’t a lot of information online and all appear to be from American sources where they use different medications to medicate with.

Our daughter will stop treatment at the age of ten and hopefully go on to have a normal menstrual cycle, although I do worry what the future will hold.

This condition has been a big part of our lives and although manageable hit us with another bombshell in winter 2013. At the age of 7 and a half years, my biological daughter from my previous relationship came home from school telling me that she had found blood in her knickers. On closer inspection it appeared to be period blood. I was completely beside myself thinking, ‘not again, what have my family done to deserve this?’ Trying to hold back my tears and console my daughter at the same time was just unbearable.

I called the endocrine team who informed me that I would have to go through the GP for a referral. I am not going to lie, I was upset at this and wondered, that with another child with a rare condition and the same symptoms, why could they not just see us straight away?

After a GP referral, consultant appointment and blood testing our worst fears were confirmed; my daughter had started puberty at 7 and a half years old! After numerous discussions the consultant gave us a choice whether to let my daughter continue to menstruate or to medicate her with hormone injections. Apparently it’s considered normal for a child of eight years old to start menstruating.

We went home that day trying to fathom how to discuss this with my daughter. She hates needles and really was against the idea of monthly injections, however, as parents we felt like she wasn’t mature enough to have a period and have to deal with that every month (it’s bad enough for us as women). We all agreed that the best thing to do was to start treatment asap and her biological father agreed with this, too.

Obviously, being that much older than my younger daughter, I had to sit down and explain why periods happen. Something that I didn’t want to do at such a young age, however, it was appropriate for us as a family. Even my six-and- a-half- year-old daughter was intrigued.

My eldest daughter continued with the injections for two years but, unfortunately in November 2015, started bleeding again, breaking through the injection. It was decided that in my daughter’s best interest, she would come off the injections as she really did struggle with them, although they were moved to one every 11 weeks they just were not having the desired effect. This was due to her weight and height. She hasn’t had a period now since January 2016 but, her mood swings are all over the place. She looks a lot older than her years and her body shape is like a curvy woman’s.

Although this condition has been a big part of our life we cannot thank our lucky stars that we pop into the hospital once a month and get to bring our daughter home after her treatment, something that other parents aren’t so lucky with.

Fabulous Fundraisers

Fabulous Fundraisers

Having recently raised a whopping £1,220 for the CGF we asked member and mum to Olivia, Kelly Biggs, to fill us in on how, along with her family and friends, they raised such a fantastic amount!

Why did you want to raise money for the Child Growth Foundation?

We felt very privileged to have had (and still are) getting so much support and advise from the Child Growth Foundation, they have literally been our life line. Knowing you are not alone is such a relief. Through the Facebook group CGF members themselves are always there to offer advice and quite often a shoulder to cry on when times get tough. We felt strongly we wanted to give something back and contribute to keeping the charity going for many more years to come so other families like ours get the support they deserve.

There weren’t many people apart from immediate family and very close friends who actually knew we had concerns about Olivia’s growth or that she was even being investigated, we just smiled politely as people quite often commented on her tiny size. We knew by fundraising we would be opening up about what we were dealing with and face the many concerned questions regarding Olivia’s health. It happened by complete coincidence when Olivia had been admitted into hospital. Olivia came home after discharge with an ng feeding tube. The questions we predicted were being asked so we thought it was the best opportunity to make people aware of our situation and how important CGF had been to us over the past almost 2 years.

Where did the idea of a Sponsored Toddle come from? And what is a Sponsored Toddle?

We wanted to do something fun for the children to get involved in so my family and I thought of a few different ideas over the following weeks, there was lots of different ideas flying around at first but I wanted to make sure whatever we did was going to bring in the best possible amount of money.

We originally planned for a “toddle waddle” for around 30 children. The idea was to walk the children a distance around our local park and charge £10 per child to attend, in effect raise £300 for CGF.

How did you organise the event? Who did you involve? And how did you find your sponsors?

We thought deeper and had a little brain wave! We decided we could hand out sponsor forms to each child taking part and they could then collect sponsors from their own family and friends. This then turned a “toddle waddle” into a “sponsored toddle”!

With that we scrapped the £10 charge idea feeling we would raise more from sponsors and didn’t want to put people off by asking for an entry fee plus sponsors! I set up a Facebook events page and invited all the children from our family and friends along.

What happened on the day itself?

We didn’t just want to turn up at any old park walk around then go home. We wanted it to be a fun filled for the children. I contacted our local park which had a farm and spoke to the Events Organiser, she advised us that a local craft fair was due to come in the following weeks and it would be a great day to have our toddle.

More thinking and the idea of a big picnic after the walk was then put into place, what a great way to unwind and rest their tired little legs! One phone call later and we also had the use of the farm at discount price. The idea of just a sponsored toddle was becoming bigger and bigger and before we knew it we had a whole afternoon worth of fun. My sister offered to do face painting before the walk, we had our picnic planned, I organised farm passes, bought balloons on sticks and made lots of sweetie bags!

How much money did you raise and how did you collect the pennies?

We raised a massive £1,220.00. Most of our donations were made through a Just Giving page we set up and the rest was collected in after the event. I gave a desired date of two weeks after the toddle as I knew how important and beneficial it was to the charity to get the money raised to them as quickly as possible so they could use it accordingly.

This isn’t the first time you have raised money for CGF, how else have you fundraised?

We did some small fundraising events prior to the toddle and for us that was a good starting point, we had people on board and everyone wanted to help.

I used the CGF small change box in my work place and added chocolate treats for a donation, this raised nearly £30. At Olivia’s 4th birthday party we held a cake sale which was very kindly financed by a close family friend, Lauren. This event raised a larger amount of £75.

I began dropping ideas of bigger events and everyone said they would help in any way they could. Before we even began to plan we knew we had the support.

We asked Kelly to share some simple ideas on how CGF members can help raise money for the CGF

Your child/children’s birthday — take the opportunity to sell cupcakes at their parties! Pop a cocktail stick in the top with a CGF sticker attached to either side to give that extra touch and spread awareness! It’s a great way to make a few quid and no one minds throwing a small donation in for a cake.

Chocolate sale in the works staff room — anyone will make a small donation for a chocolate bar especially on a Friday afternoon! We got a six pack of Twirls for just £1 at the local Home Bargains, we split the packs and added stickers which were kindly posted out by CGF, a good return was made.

Do your children attend after school club such as swimming, martial arts or football? Why not try a sponsored activity? Get the whole team involved with a sponsor form each! Set a target such as number of metres swam. Or a kick-a-thon at martial arts class? 100 kicks in 2 minutes? Maybe hold a Charity five-a-side football match charging a ticket price? Great one for the Dads too!You could also do a few ‘spot the ball’ cards whilst their playing or a hotdog sale to raise extra funds?

Do you have any further plans to fundraise?

Our family and friends are very much aware of how passionate we are about CGF, how very close to my heart it has become and what it means to us as a family to give something back. We had such a fantastic day at our sponsored toddle with lots of excellent feedback and questions of “can we do it again” well the answer is yes! We’ve decided to do it again next year, and hopefully make this an annual fundraising event which can only get better! The support we’ve had from family and friends has been amazing. I’m bursting with happiness at what we’ve achieved and feel so proud of all who was involved, we couldn’t have done it without them.

A massive thank you from everyone at CGF to Kelly, Olivia and your family and friends for all your support and fundraising efforts, you are true superstars!!!

Growth Awareness Week 2016

Growth Awareness Week 2016

For Growth Awareness Week member, Laura, writes about her son, Samuel, who was born 11 weeks early. Most premature babies catch up so Laura never questioned Samuel’s growth until he was referred to an Endocrinology team, at age three, to monitor his growth rate.

On the 30th March 2011, 11 weeks before his due date and weighing 820grams (1lb 13ozs), Samuel made a dramatic entry into the world.

Two days earlier during a routine scan at Solihull hospital, the team discovered that Samuel was not growing and probably hadn’t done so for two to three weeks due to an absent end-diastolic flow. I was immediately transferred to Heartlands hospital in Birmingham where they promptly diagnosed that I was suffering from Pre-eclampsia.

Following a forty-five minute emergency caesarean section operation performed by an eighteen person medical team led by Mr Mike Wyldes, Samuel let out a small cry as he was delivered and ready for the fight that lay ahead. He was soon whisked away to the neonatal unit where he would take residence for sixty-eight days.

Samuel was extremely strong, having been placed initially on CPAP to support his breathing as a precautionary measure, he was breathing by himself within twenty-four hours. My condition however, got progressively worse, being diagnosed with HELLP syndrome, my liver was failing and my blood was not clotting properly.

After 24 hours, my condition thankfully stabilised and once able to prove to the midwives that I could get out of bed unaided, I was allowed to go and see Samuel. He appeared so fragile, his body covered in many wires and tubes. The nurses carefully took Samuel out of the incubator and placed him on my chest for some Kangaroo Care (Skin to skin contact). This was to become a daily routine.

We were warned that a premature baby’s journey in Neonatal was akin to a rollercoaster. During the first week Samuel did not tolerate breastmilk and had bile in his stomach. He was required to remain on Total Parental Nutrition (TPN) in which essential food is fed through long lines into a child’s body.

Two weeks after his birth, Samuel started to tolerate milk and the Doctors decided that they would remove Samuels TPN. Something was not right, I could see Samuels heart rate increasing and his temperature rising on the monitors. Then Samuel’s apnoea monitor sounded an alarm, Samuel stopped breathing. Emma, the neonatal nurse gently rubbed his back and he started to breathe again. However, Samuel stopped breathing again moments later, and having suspected an infection being caused from the TPN line, Emma had already summoned the doctor to assess Samuel and address his condition. The Doctors and nurses immediately placed Samuel back on to CPAP together with a course of antibiotics in order to fight the infection.

Samuel needed to gain weight, this would be a slow process and was always commented upon by doctors during their rounds. Whilst in the incubator, Samuel was fed breast milk which had been fortified. His weight soon increased, but once he weighed enough for a cot, his milk was no longer fortified. Unfortunately, whilst in the cot Samuel actually lost weight and the hospital assigned a dietician who decided that Samuel should consume High Energy SMA.

Samuel began increasing in weight with this new milk and was finally discharged from the hospital. Whilst at home, Samuel continued with High Energy SMA. Although not a great feeder and being sick often, Samuel did put weight on, finally achieving the 25th Centile.

Weaning Samuel was difficult and it was during this period we discovered he has quite a strong gag reflux. He would often be sick, even on pureed foods. We had to ensure Samuel consumed the correct quantity of food so as to not be sick. Nappy bags soon became a great form of sick bag (and we still carry them around today!), sick bowls would be placed in several locations around the house in case of an emergency.

Samuel’s Neonatal consultant closely monitored him, even though he was increasing in weight (albeit very gradually), his height was not increasing. We had always been informed that ‘catch up’ growth would probably happen in the first two years. Samuel never caught up with his peers.

At eighteen months old, Samuel was no longer taking high energy SMA and instead he was given Fortini supplements. This continued to make Samuel sick so we took the decision to stop the supplements. Samuel still had support from the dietician until the age of three, but as Samuel was at least eating regular meals, the dieticians felt there was nothing further they could do.

When Samuel was younger he struggled to fight off infections. When returning home from my first ‘back to work’ day, I noticed that Samuel was struggling to breathe and I took him straight to the GP’s who advised to take him straight to A&E if his condition worsened. That night was spent in A&E (a winter was never a winter without a trip to A&E).

At three years of age, the Neonatal Consultant referred Samuel to the Endocrinology team at Birmingham Children’s Hospital. We were really hoping that Samuel would be discharged from his care (by this time all of the other children who I had met while Samuel had been in hospital had been discharged). We never really questioned Samuel’s growth before this, we knew he was smaller but there were some possible explanations. Firstly, Samuel was born prematurely, secondly, both sets of grandparents are not particularly tall and thirdly we actually believed that he would ‘catch up’, he just needed time.

Samuel’s initial Endocrinology appointment was fine, a decision was taken to measure his height accurately for 6 months so that the consultant could monitor him on a height velocity chart to understand his growth rate.

During the next appointment, I felt Samuel had grown by less than one inch in 6 months. His health hadn’t been particularly great over the winter period. We discussed the next steps with the consultant and had to take the decision whether to start testing for growth hormone deficiency now or in 6 months time. We made the decision to start the testing right away.

The Stim test concluded that Samuel was Growth Hormone Deficient, so a second test was arranged, the arginine test. The results of the second tests resulted in Samuel being diagnosed as being Growth Hormone Deficient. On the 31st July 2015 Samuel was injected with his first dose of growth hormone. The decision for growth hormone centred on wanting to give Samuel an opportunity and if this did not work then we could be satisfied that this avenue had at least been explored.

The first three days were tough with many tears and tantrums. Honesty has been the best policy with Samuel by explaining to him why he requires growth hormone. Samuel is fantastic with the injections, taking all in his stride without a single complaint.

An MRI scan arranged by the Endocrine team discovered that Samuel has a small pituitary gland.

Samuel has now managed to be recorded on a growth line, although the 0.4th centile is was a level that he had never reached before. Samuel’s health has dramatically improved, no sudden trips to A&E (touch wood) and no need for the frequent use of inhalers.

Samuels weight is still of concern, having only gained three-and-a-half pounds in one year. We are trying to obtain another referral for a dietician and for a physiotherapist (as his gross motor skills are not at satisfactory levels, Samuel struggles to push the pedals of a bike).

Samuel is also being checked by a genetics team. A micro array test result was clear, the team are now testing for Russell Silver Syndrome.

Recently Samuel had his first operation in which two cysts removed from his mouth. He was incredibly brave and the hospital were fantastic.

Samuel is doing extremely well at school and he work very hard. However, he does often get frustrated with his peers because they are too young to realise that every one step of theirs requires two from Samuel and all of the various medical appointments or tests that Samuel has to endure. Other five year olds do not realise that by calling Samuel ‘small’ or ‘a baby’, it affects him and he’ll ask ‘Am I getting bigger? ’.

Samuel is now five years old and although he is currently diagnosed as being Growth Hormone Deficient, he is never disheartened and never gives up. A truly courageous and special little boy.