Spotlight on Emily – A True Story

For this blog post, we’re going to do something a little bit different. We usually highlight a topic or theme of importance to us that we feel will resonate with our readers but without an overly personal angle. This time, however, we would like to share the direct experiences of a client of Gym Bubbas with you all. The reason for doing so is that the mother in question has a daughter who has been attending our Additional Needs Classes, and we found that her perspective and journey have been heartwarming and rewarding for everyone involved. Emily’s mother Laura, who was kind enough to sit down and have a long chat over a cup of tea with us in preparation for this blog, has kindly given us permission to share the details written here. She also feels that this is something to share and we all hope that if you are facing a similar situation, there is some comfort or inspiration to be taken from this post.

A Bit About Emily

Emily is a happy, friendly seven-year-old who was born with a rare genetic condition known as 5P- Syndrome (pronounced “Five P Minus”). This condition is caused due to the genetic deletion of the short arm (which is the P arm) of the fifth chromosome in affected people. The deletion is currently understood to be a random occurrence during normal cell development and is incredibly difficult to detect prenatally, meaning that most parents discover the condition after their child is born. This was also the case with Emily and her parents.

There are numerous possible effects of 5P- Syndrome; in Emily’s case her speech has been affected, along with reduced and slow growth, poor muscle tone, significantly delayed walking and poor spacial awareness. As 5P- is a rare genetic condition, it is currently estimated that it affects around 1 in every 20,000 – 50,000 births, which is 0.005% to 0.002% of babies born each year. To put this in some context, there are around 55 babies born in the United States with the condition every year, and Emily is one of three children with the condition living in the Plymouth area that Laura is aware of. There is also a global Facebook group dedicated to the condition, which has around 50,000 members.

But none of this has stopped Emily from enjoying life, school and various activities such as her gymnastics classes. She is usually happy and upbeat, has a strong will that she is not afraid to demonstrate, and often has a cheeky smile at the ready.

Finding Her Way to Gym Bubbas

Gym Bubbas first appeared on Laura’s radar when Emily was three. She had been discussing activities for their children with one of her friends, who also had a child with a similar chromosomal condition, and her friend mentioned Gym Bubbas. There were some understandable questions surrounding how a child with Emily’s needs might participate in a gymnastics class. But her friend insisted that she would be included and able to join in to the extent of her abilities, and, according to Laura, constantly “spoke VERY highly of Gym Bubbas”. So, after having finished attending baby sensory classes as Emily was now too old for them, Laura decided to roll the dice and give Gym Bubbas a try.

Signing up for a Trial Class, Emily got her first taste of gymnastics in a 2.5 – 3.5 Year Class, as this fit her age at the time. Laura remembers clearly that Steph and Jaymee were taking the class because she was impressed by how welcoming and inclusive they were of her and Emily during their trial. They had had some less-than-ideal experiences in the past where staff had not known how to include Emily, or other parents and/or children had been unwelcoming etc. But she found Steph and Jaymee to be “fantastic, and very supportive”, and the other parents and children simply accepted her and Emily as just another member of the class. While we were discussing this experience, Laura emphasised to us how much it meant to her to simply be accepted and included as they were. It’s such a simple thing, but it truly did mean a lot and give them both an excellent first experience, and gave Laura the confidence to sign Emily up for a full term.

Growth and Development

For the next six months, Emily was a regular face at her 2.5 – 3.5 Year Class, and she seemed to really be enjoying it. But when she started school in the Autumn term, a space became available in one of our Additional Needs Classes that we were able to offer to Emily. This move was suggested entirely to better promote Emily’s physical development. She was happy in her regular class, but an Additional Needs Class would allow our staff to spend more time focusing on her specific needs, which is usually something we can achieve with larger groups of children in other classes. But given Emily’s reduced muscle tone and other physical symptoms of 5P- Syndrome, the extra focus would be a huge benefit.

So Emily moved into the Additional Needs Class and promptly set about making new friends. Our staff were able to design an exercise routine for her that would help with all manner of movement skills. The most prominent one that has been worked on recently has been moving from a sitting position to standing, which mirrors the work that Emily’s physiotherapists have been doing with her. Although, it is important to note that we have no direct contact with medical professionals, in a formal manner, for Emily or any of our children at present. Our door is always open should any wish to reach out and liaise about a specific child’s needs or any other way in which they believe we can aid a child. This being said, there have been incidents where physiotherapists have recommended us to parents, and even one of Emily’s therapists recommended us without knowing that she was already a proud member of the GB Squad!

Laura has noted how amazing this synergy of exercise plans has been as Emily can be quite resistant to her physio during their sessions but is almost always more than happy to do the same exercises with the staff at Gym Bubbas. As a result of this, not only does she get her regular physio exercises in, but often a good amount of bonus work as well, which has really helped push her development in a way that probably wouldn’t have been possible without Gym Bubbas. During her time with us some of the things Laura noted as Emily’s bigger achievements have included climbing an inclined tunnel and performing a forward roll; two things which Laura would have found unimaginable just a short while prior.

When we asked Laura how she felt attending our classes had affected Emily, she was quick to answer that she is definitely more social than before coming to the gym, and has made some good friends in her classes.

Also that her confidence and core strength have both improved significantly as well. She pointed out to us that from her perspective “Gym Bubbas always puts extra effort into keeping communication open with parents, especially those with additional needs, and that this really means a lot to her.

We were about to move on when Laura added something interesting concerning parents. She pointed out to us that having the children in class acted like a mini 45-minute “therapy session” where they can have a small break and a cuppa, and talk to other parents with children of similar needs. Those few minutes talking to others in a similar situation, and who understand the hardships, and all the ups and downs that you yourself are going through may not be an intentional feature of the class, but it’s an immensely welcome one.

Summarising her feelings on the classes, Laura stated that “It’s a very accepting, safe and welcoming environment for both parents and children. This is huge for me. I couldn’t choose one best thing about our experiences, for me it is unidentifiable, I would have to say it’s everything. I want to be very clear that there is nothing else like this!

Recommendations and Summarisations

To close out our time chatting with Laura, we asked for her opinion on sports classes that are geared specifically toward children with additional needs. The response was a resoundingly positive one, and she made it very clear that parents of children with additional needs should seek out activities like Gym Bubbas if it is appropriate for their child, citing swimming as probably one of the other best activities she had found. She added that, in her mind, Gym Bubbas represents the high benchmark in this regard, as it has been her experience the staff were first-rate, expertly trained and knowledgeable. The staff have made Emily’s time in the gym fun by being creative and finding inventive ways of maximising what children with additional needs can access. She feels that it has had a massive impact on Emily, and it has been wonderful for her to have an activity outside of school that is hers to enjoy and explore, with her additional needs not being a defining factor for her.

Finally, we asked Laura if she would have any advice or a message for parents of children with similar needs to Emily. Honestly, the response she gave speaks for itself, so we’re going to end this blog by quoting Laura one last time, but before we do, we hope that this little story of development and growth might reach even one parent of a child with additional needs and encourage them to give something a go. Not everything is going to work for every child, and everyone has different needs. But Gym Bubbas will always try our best to include and help every child we possibly can, and there are plenty of other sports establishments that we’re sure would feel the same. So thank you for reading about Emily and Laura’s journey, and let’s give the final word to Laura:

“My biggest advice is to not be scared to try things. It can be easy to worry yourself into not trying things, but there are always places like GB that are going to be open and welcoming, and this is always going to be good for the children and a potential support network for the parents. Give it a go!”