The Wolf Hirschhorn Syndrome Trust National Meeting

Two weeks ago I was fortunate to be able to attend the National Wolf Hirschhorn Syndrome Trust meeting at the Hilton Hotel in Northampton. It is an event we have attended as a family many times and one I very much look forward to. It is usually a bi-annual event but unfortunately was postponed last year due to covid.

How It All Began

The Wolf Hirschhorn Support Group was founded many years ago by a lovely lady named Chris Hilder. Chris herself had a son Stephen who was diagnosed with Wolf Hirschhorn Syndrome and I had the pleasure of meeting Chris, Stephen and her daughters many times. Sadly Chris passed away several years ago but her legacy lives on in the form of the support group.

When James was diagnosed in 1999 we were given very limited information about his prognosis and so we set about some research ourselves and that’s how I came upon Chris. I contacted her and she sent me out some information about Wolf Hirschhorn Syndrome and also about the support group.  

The first conference we attended was in Derby in Sept 1999. It was the 6^th national meeting. In those days from what I remember the conference was just a day attendance, no overnight. Going the first time I remember having a real mixture of feelings; excitement at finally meeting other families and children with which we had something in common and yet a lot of trepidation too not knowing what to expect, facing the reality of what the future may hold for us and James.  We were met by a group of warm welcoming people who were all seeking comfort and support from others with whom we share the same bond. We have now attended 11 conferences, each one becoming bigger and better than the last and we have made many friends along the way. In 23 years of attendance we have seen our toddlers grow to adults, we may look a little more frazzled ourselves and yet we are all here, all still full of enthusiasm and fight and enjoying the benefit of each other’s experience.  We share the tough realities of day to day life but we also share the joy too, and at every conference we welcome new families to what is a very special group. All of this because of Chris Hilder.

Fast Forward to Northampton 2022

This year Darryl, James and I arrived at the Hilton late Friday afternoon. For the first time we had taken a member of staff with us from James’ new home, Hayden. We were pleased to see several other families had already arrived and they continued to do so throughout the evening. Having settled in we spent the evening socialising and catching up with the other families.

The programme for the weekend was jam-packed and we knew Saturday was going to be a busy day so we didn’t intend to get to bed too late. Well, that was the intention. James had other ideas. As is usually the case the first night in unfamiliar surroundings means it can take James some time to settle. Having had his gastrostomy feed Darryl gave James a bath I set about getting James into bed. He refused point blank to even get onto the bed. I spent the next few hours coaxing James onto the bed, reading him books and singing with him. With each book or song I gradually persuaded him further back into the bed until eventually he was laid down.  Many songs later his eyelids were heavy but he refused to give in. I eventually crawled into my own bed at 1.30am. 

The conference has been at this particular hotel many times and the staff are very helpful and accommodating. Nothing is too much trouble and they meet all the varying dietary needs of our group.  We do take over much of the hotel including a wing with meeting rooms which accommodates all our needs from changing rooms to the creche. At the early conferences we used to look after our own children but this wasn’t always easy when speakers came and they had to compete with our very vocal and bored children. As the conference has progressed an outside group has been brought in to care for our children in another room and they entertain them whilst the parents listen to speakers and consume as much tea, coffee and pastries as possible (which are in endless supply). We had the added benefit too, this year of knowing Hayden was there to look after James, which he did superbly. 

Speakers and Presentations

As the conference has evolved it’s now often the case that different talks take place at the same time and so, depending on what interests you or is relevant, you can choose which you attend. For new families they may be interested in hearing Dr Oliver Quarrell (retired Consultant in clinical genetics Sheffield Children’s Hospital) talk about genetics and diagnosis and the new research taking place. For those of us who have heard this before and whose children are now older and feel this is less relevant you could choose to attend a talk by one of the long-standing members of our group about personal budgets and challenging authority. Also, during the morning there was an online presentation by Dr John Carey who is Professor at the Dept. of Paediatrics, Division of Medical Genetics, at the University of Utah, USA. Another WHS parent who has attended the conference for many years is Marta Cohen OBE, and she did a presentation about transitioning to adulthood. Marta is a clinical paediatric pathologist and currently head of the Dept. of Histopathology and Clinical Director of Pharmacy, Pathology and Genetics at Sheffield Children’s Hospital, and a honorary professor at the University of Sheffield.   

At lunchtime parents collect their children from the creche and we all head to the restaurant where there is a vast selection of food. We had lunch with James and Hayden and caught up on their morning. A petting zoo had visited the creche and James happily touched a corn snake but wasn’t so keen on the nice fluffy rabbits!!  

On Saturday afternoons the siblings and some of the Wolf Hirschhorn children/adults head off into Northampton to go bowling. Hayden took James and while they were bowling we attended a talk by Victoria Frederico. Victoria is a special educational needs solicitor and her talk largely focused on EHCPs as she assists with appeals to the SEND tribunal ensuring that families receive the correct support, therapy provision and educational placement.  There was a pre-recorded talk from Chris Oliver on Behaviour and Wellbeing in children with Wolf Hirschhorn Syndrome. Chris is Emeritus Professor of Neurodevelopmental Disorders at the University of Birmingham. Later in the afternoon was a workshop presented by Kathy Vogt to help parents and carers manage their wellbeing, resilience, worry and aspects of self-care.    

After tea and coffee some of the Wolf Hirschhorn Trust talked with parents about the future of the Trust. They are always looking for new parents to get involved to keep the group going as there is an awful lot of work goes on behind the scenes. In line with the Jolly Jungle conference theme the children did a parade and then it was time for the group photo which takes place at every meeting. Co-ordinating that is usually chaotic but we actually got it done without too much trouble this year. 

Saturday Night

After some time out we all reconvened for the evening meal and disco which is always a highlight. During the disco the children all enjoyed playing with their jungle themed balloons and I think everyone took the opportunity to have their picture taken in the photo booth. James loved the disco and had myself and Hayden up dancing with him and we finally called it a day at 10.15pm. Thankfully James settled down nice and quickly in his bed Saturday night.

Sunday

Sunday at the conference is less formal. After breakfast we headed down to the conference room where the children enjoyed a magic show then we moved outside for a bubble show. After taking a break for lunch and after the raffle we enjoyed a jungle drumming session with Tom Morley. Older readers may recognise that name as Tom was in the 1980’s band Scritti Politti. The drumming was amazing, I’ve never seen so many drums in one room and Tom had the majority of people up drumming and dancing. Tom has also come on board as the first WHST patron in the 28-year history of the Trust. After the drumming, which left everyone on a high, there was a little more time to socialise and for everyone to say their goodbyes.   

Having never been to anything like it before Hayden didn’t know what to expect at the conference but he really enjoyed it. He chatted with other families, many of whom were asking if the same company ran homes in their area. Hayden enjoyed meeting all the other children and young adults with Wolf Hirschhorn Syndrome as until he met James he had not known anyone with the same diagnosis. He was interested to see the vast range of abilities and complexities within WHS. He also enjoyed seeing James in different surroundings, especially at the disco.

Thank you

Personally, we would like to thank the organisers of this years conference, Andy Hannath and Thomas Almeroth-Williams, and those previous organisers who we were pleased to see again this year too. A tremendous amount of work goes into organising such an event and we do appreciate the time and effort that goes into. Sadly, over the years we have lost some of our Wolf Hirschhorn children and adults and we remember them with fondness as we welcome new families into the fold and look forward to future conferences. In total 34 families attended this year, including 2 from overseas. Damien who is a long standing member, and Roberta who flew in from Lithuania to attend. I had a really interesting conversation with Roberta about how disabilities are perceived in her home country and how she has had to fight for recognition and support of her daughter’s needs. Roberta was very excited to be with us and to be welcomed into our group. 

Support The Wolf Hirschhorn Syndrome Trust

Small charities really struggle to raise funds and if you use Amazon you can help by nominating a charity to support. To sign up visit smile.amazon.co.uk, sign in to Amazon then choose the charity you wish to support, in this case the ‘Wolf Hirschhorn Syndrome Trust’. You only need to do this once but then remember to use smile.amazon.co.uk in the future. 

You can also do this through the app. You need to join Amazon Smile and then turn on Amazon Smile in the app.   

If you’d like to find out more about Wolf Hirschhorn Syndrome and the support group then please visit their website at whs4pminus.co.uk  A new website is currently under construction as the current one is a little outdated. The new one will hopefully be up and running late this year.