19th/18th June, Stoke-on-Trent
Twenty one families with 58 children converged on the Best Western Moat House Hotel in Stoke-on-Trent one weekend in June for the Second Annual MGA Children’s Weekend. Twenty four of our children are myasthenic – 19 with CMS and 5 with MG. And we had a blast!
On the Saturday we held our conference and heard from Dr Julianne Mueller, Institute of Human Genetics, Newcastle University, about the latest “Research Projects and Therapeutic Options for Congenital Myasthenia”. Christina Goldsworthy, MG Nurse at the John Radcliffe Hospital, gave us an update on the Oxford Myasthenia Service, followed by lively sessions from Debbie Clarke, Paediatric Neurology Outreach Nurse, Evelina Children’s Hospital, Guys & St Thomas on “Myasthenia, the Child and School” and from Andy Hiscock Research Physiotherapist, Institute of Child Health, UCL (Great Ormond Street) on “The Role of Physiotherapy in Childhood Myasthenia”.
The conference provided much material for discussion late into the evening where old friendships were revived and new ones made. The following day families headed off to Alton Towers thanks to complimentary tickets from Merlin Entertainments.
The families are immensely grateful to Jeans for Genes and the D'Oyly Carte Trust who supported the gathering.
Why the Children’s Weekend is important – in their words:
Kerry, Gordon, Jimmy and Adam Webster - Gordon, Jimmy and Adam have a CMS.
“We especially enjoyed meeting all the families and looking around the room at breakfast it was amazing to think that this was probably the first time so many children with MG and CMS were in the same place. The kids all got on so well and good friendships were formed. I know my two boys look forward to meeting their friends to swap stories.
“I found the conference day very informative and it was great to have a physiotherapist, specialist nurse and genetic researcher available to answer our questions. I also learnt a lot from the other parents about different treatments and pieces of equipment and also other avenues of support that families have benefited from.
“It was lovely to see young people who had left school and were moving onto college and doing really well as this transition always worries me.
“I am very excited about the way Myasthenic Kids has been able to move forward and the actions that came from our meeting. I think this annual meeting is invaluable and needs to continue if we are to help each other and ensure that those professionals who support us locally and may only meet one Myasthenic in their careers have the best information. We can be proactive and help our doctors and health professionals provide the best management of Myasthenic symptoms as long as we keep in touch with each other.”
Jim , aged 14 with CMS, says “It was good to see other children with Myasthenia as I never meet anyone else who has this…. I loved the breakfasts and I liked going on HEX at Alton Towers. I have never been there before.”
Adam, aged 9 with CMS, “I think the weekend was really fun. I loved Alton Towers, especially getting wet in the water battle. I liked seeing my friends.”
Tracey Reade - “We all enjoyed the weekend and found it very informative. Meeting the children and their parents and sharing experiences and swapping ideas helped a great deal. The conference was very good offering some vital and very useful information for all the families.
“It was also a good chance to hear other parents stories and about their experiences. Georgia thoroughly enjoyed the weekend and enjoyed meeting and socialising with all the children.”
Tracey Tookey - “We all had a great time. The conference was very useful and gave us the chance to share information and learn way more than we ever would have just speaking to our consultants.
“Meeting other families was both helpful and inspirational, so many of them have been through/are going through huge struggles and it is interesting to share coping strategies and ideas.
The children had a great time, for Lewis and Max especially as it’s the first time they have met other children with the condition.”
Corinne Wilkes - “We had a fabulous time on the Children's Weekend. It was a fun weekend including Alton Towers and the hotel was perfect, provided all the necessary amenities. For me, it was great to speak to other parents.
“Louis and Oscar thoroughly enjoyed it. I think at their age, purely for the entertainment value and playing with other children. I think that it is good for Louis to continue to stay in touch with other CMS children over the years as I think that when he is older and wishing to speak to people independently then he can communicate with friends that he has made over the years.”
Karen Hobbs - “The girls had a fantastic time. It also opened the eyes of Jessica’s siblings to others with the disease. Jessica’s illness has affected the whole family and her siblings are suffering in so many different ways. Jessica often feels so different, so it was so nice seeing to see her laughing with other children. It has given her something to look forward to and we hope we are able to get funding for future years. Jess has kept in contact on Facebook with a few of the girls she met at the weekend , which is nice to see as these are the only children she will chat too.”
Gerry Thomson - “Being able to meet other families who are in the same position and encountering the same problems was very reassuring that we are not alone. Making new contacts is vital for parents who have children with MG/CMS. Being able to confide in someone else who has been through the tough road and has come out the other side or is able to give you just one tip of how to cope is most invaluable.
“Lee thoroughly enjoyed the weekend. It made him realise just how lucky he is. Having been diagnosed with MG at age 10, having a thymectomy at 13 and now at 15 being almost symptom free. He was able to speak to the other children about his journey and give them hope that one day they may also be like him.
“The conference was very informative. We all have so many unanswered questions. But every little piece of information just makes you feel more empowered to cope with the condition. Understanding how it affects everyone and hints on how to get the help needed for our children is also very important.
“We have never received any help for Lee as we didn't know we could get any help. This is information that should be given when a child is first diagnosed.”
