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Matilda jones

Matilda was born in November 2018. She was a petit baby, but she managed to breastfeed well and could take her bottles. Despite Matilda feeding a lot, her weight gain was slow and at seven weeks she was diagnosed with a ventricular septal defect (VSD) - a small hole in the heart. This raised alarm bells in light of her sibling Ayla's challenges, and at 10 weeks Matilda suffered her first seizure, which lasted 30 minutes. 


Matilda has been on multiple medications and suffers daily myoclonic jerks. She has been admitted to PICU six times for prolonged seizures. In 2019 it was discovered that Matilda had Brugarda Syndrome, which can mean that a lot of medication can cause respiratory and cardiac arrest. These medications include Diazapam, Phenytoin and Ketamine - all drugs used for status epilepticus.  

In late 2021 Matilda was diagnosed with the rare CRELD1 gene variation, which came as a result of Lola and Alfie Clatworthy's diagnoses in the UK. 


Matilda was experiencing a bad spell in early 2022, but was put on a short course of steroid treatment and this made things better for her. She's since started treatment with Epidiolex cannabolid and has seen great results reducing her daily myoclonic jerks. 

Matilda is developing into a clever, cheeky young lady, and although she doesn't meet the milestones of most three year old's, she is learning everyday. She loves music, lights and stories. She loves having baths and using the hydro pool at Demelza Hospice.  

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