An MS diagnosis at any age can be life changing. Whilst the average age of diagnosis is between 20-40 years old, children and teenagers can also develop MS – with some as young as two years old. It is thought that up 10% of people living with MS either experience their first symptoms or receive a diagnosis in childhood – also referred to as paediatric MS.
Recently, we met a young girl called Connie Baker who is taking part in this year’s The May 50K. Connie is 9-years old and was diagnosed with paediatric MS just six months ago.
Connie has always been a vibrant and enthusiastic child, enjoying school sports, playing the drums and she’s even a little Math whiz!
However, despite her determination to throw herself into almost everything, Connie had been experiencing migraines for around five years. As the migraines got progressively worse, Connie’s parents took her to a paediatrician who immediately sent Connie for an MRI, which sadly discovered lesions on her brain.
After a week of staying in hospital and undergoing multiple tests, Connie was diagnosed with MS.
Currently, Connie’s MS symptoms are showing as migraines, but her mum Paula understands that this is only the beginning of her daughter’s MS journey.
“Connie doesn’t want to know about her disease and how it may progress in her lifetime. She doesn’t like all the appointments and tests, but she knows she needs them to stay healthy.”
Other than living with MS, Connie is just like any other 9-year-old with big dreams for her future. She wants to be a teacher when she grows up, have children and a two-storey house. Connie says that “just because you have MS doesn’t mean you can’t have fun.”
Fortunately, the Baker’s have received wonderful support from their friends and family throughout this challenging chapter. From school pick-ups and hand-made cards, to checking in on Connie at the hospital and offering emotional support – Paula says they are lucky to have a very caring network.
Despite the only recent diagnosis, the Baker’s decided to take action and show Connie that they will support and love her through anything life throws at her. This May, Connie and her family are taking part in The May 50K to help find better treatments and cures for MS, in support of other children, teenagers and adults who are also living with the disease.
Paula believes in research as the key to ensuring Connie can live a relatively normal and fulfilled life.
“What if the funds we raise enable the research that cures MS? We have to be passionate about research because this is our daughter’s life. This is her future, and we will do whatever we can to make it better.”
Connie and her siblings were also excited to get involved and walking:
“Mum asked us at dinner one night if we wanted to raise funds to help find cures for MS.
She said we had to walk A LOT but we would do it as a team (and her and dad would do most of it) – so my brother, sister and me said YES!”
We are in awe of the strength and positivity Connie and her family have shown since her diagnosis.
We wanted to show Connie that she’s not alone and that the MS community wholeheartedly supports her, so together with her parents Paula and Graham, we prepared a little surprise for her.
We created the ‘Connie’s Crew’ team and asked The May 50K participants to join the team in support of Connie to help leave MS behind. The surprise was a huge success, with 847 participants joining Connie’s Crew, who so far have raised over $238,500 for life-changing MS research together – a record-breaking effort!
You can watch Connie’s reaction to her surprise reveal on the Kiss Goodbye to MS Facebook page here – her smile says it all!
Thank you to everyone who joined and showed Connie that she’s not alone on her mission to Kiss Goodbye to MS. Together, we’re accelerating vital research into MS to create a brighter future for people and children living with MS like Connie.
Do you want to join the movement and stand with courageous Connie? It’s not too late! You can register and join the team here by clicking on the ‘Join us’ button.