Leo’s story has been written by his mum, Justyna. The day we found out I was pregnant with Leo was one of the happiest days of our lives. My pregnancy was normal. I gave birth at term in April 2023 to a healthy and strong baby boy who brought so much joy to our lives […]
Warrior posts
Our September warrior – a ray of ‘son’shine
Our Ray of SonShine, Our Baby H When my little miracle baby was 6 months old, he began showing some strange movements, and without going into the triggering details, my precious boy was diagnosed with Infantile Spasms. ‘Rare’ condition, they said. ‘Development Delays’ ‘Autism’ ‘Front line meds, steriods, seizures’ All the words, I have never […]
Our August warrior Luca
Luca’s story is written by his mum Leah Luca was born in January 2023 a day before his due date. I had a straightforward pregnancy & a peaceful home birth with no complications. Luca was developing well and reaching the usual milestones on time up until around 5 months of age. For a few weeks […]
Our July warrior Betsy – three and thriving!
Our July warrior’s story is written by her mum, Sally Betsy was born by Caesarian section, I had a normal pregnancy with no complications and have three other children who were over the moon to be big brothers. Everything was going well, she was hitting milestones and developing as she should. Around Christmas time we […]
Our June warrior Sariyah – defying the odds
Sariyah Jai is our Warrior Princess. She is beautiful, smart and has the most infectious smile that lights up any room. She cheeky, has a mischievous side and gives the best kisses ever. We recently celebrated her 6th Birthday with a garden party that she was able to enjoy with her family and friends. We […]
Our May warrior Millie
Millie was born 9th September 2021, around Christmas/January time we noticed that she wasn’t using her right arm half as much as her left. After numerous doctor visits we were referred to a paediatrician. However, in March I noticed she was doing some unusual movements, a bit like she was being made to jump and […]
Our March warrior Isaac
Isaac was born in July 2022 after a pretty smooth sailing pregnancy (although in the middle of a heatwave!) He was a happy baby who was an amazing sleeper In January 2023, I noticed some strange movements when Isaac woke from a nap. After being dismissed by the GP who told me “it is not […]
Our February warrior Zack – stroke survivor and infantile spasms warrior
Zack’s story is written by his mum, Libby. A stroke around the time of birth or in the first few days of life is one of the most common underlying causes of infantile spasms developing at some point in the first year. Approaching the end of a completely normal pregnancy something was suddenly not quite […]
Our January warrior Dante – a success story for the ketogenic diet
Dante was born in 2017 at 38 weeks completely healthy and he was a happy baby. When he was 11 weeks old we started to notice strange movements. At first it seemed like a regular startle reflex but then we noticed that the movements came in clusters and were far too frequent to be just […]
Our December warrior Caleb
Caleb’s story is written by his mum Adela. A small proportion of children with infantile spasms later develop Lennox-Gastaut Syndrome – characterised by multiple seizure types and characteristic EEG abnormalities. Seizures in LGS are often difficult to treat. Caleb’s story illustrates the difficulties families with drug resistant epilepsy are still having accessing medical cannabis, despite […]
