Since Cecelia was born, she has experienced thousands of seizures. Her brain shows signs of constant epileptic activity, and much of her world has revolved around doctors’ appointments and medications.
Cecelia has been diagnosed with a rare form of drug-resistant epilepsy called KCNQ2E, which means she has several hundred severe seizures every single day. Due to the constant brain activity, she has experienced developmental delays and was unresponsive to any form of stimuli.
When Cecelia came to Dame Vera Lynn Children’s Charity for her initial assessment, she slept most of the way through, remaining in her parents’ arms, where she is most comfortable. She was distressed by being moved and even experienced a seizure during the session.
Soon after her assessment, Cecelia’s medication was changed, meaning that she had to isolate from other children. This meant cancelling the plans for Cecelia to start sessions at the centre. However, our Outreach Worker Jos came up with a solution.
Because of Cecelia’s condition, it was too early for her to undertake any form of physiotherapy. She was unable to engage in play due to her lack of response to stimuli and the team did not want to overwhelm her with strange sounds and lights from toys. It was instead decided that Jos would take her baby massage training directly to Cecelia’s home. Over a 6-week period Jos taught Cecelia’s parents how to massage her in ways that would relax her and help with areas of discomfort and tension.
Immediately, it became obvious that Cecelia enjoyed her sessions with Jos more than anything else she had experienced so far. Upon hearing Jos’ voice when she arrived for her weekly sessions, Cecelia would smile and behave entirely differently. She would close her eyes, unclench her fists, breathe more calmly during massages and would coo when deep pressure was applied to her feet.
It was the first time her parents had seen her enjoy something.
Alongside the many health benefits, baby massage can be an excellent way to introduce positive touch to children who have experienced a large number of medical procedures, helping parents to connect with their child on a deeper, more personal level. Cecelia’s mum has expressed wanting to cry with joy when seeing how happy Cecelia is during baby massage sessions, while her dad has described how this form of outreach has been beneficial, not just for Cecelia, but for the whole family.
“I cannot put into words what it means to have someone look past a medical label and simply delight and revel in who your child is. Jos brought genuine joy, pride, and compassion to our entire family.” – Cecelia’s mum Alisha.
As Jos has helped the whole family unlock a deeper connection with Cecelia, she has also provided a great sense of companionship and comfort to a family who felt isolated and stressed for their daughter’s health. Her presence didn’t only have a calming effect on Cecelia, but on the whole household.
Our time with Jos has been genuinely life-changing, and we will always be deeply grateful to her and the charity
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Alissa, 2 years old
I don’t think there’s another service that compares. We feel so lucky to be able to access it. You can tell that the staff really want to help and want Elsie to do well. It’s just so nice to have another cheerleader.
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Elsie, 3 years old
