Just4Children are fundraising for specialist equipment and physiotherapy to help Otis hold his head up, sit, stand and walk and to overall improve his quality of life.
Otis is 14 months old from Oswestry in Shropshire. He has an extremely rare genetic condition called UBA5 which only 30 other children in the world have. This gene alteration means Otis has a devastating type of epilepsy called infantile spasms. This type of epilepsy means Otis struggles to develop in any area because his brain is constantly chaotic. Our little prince is tube fed as he has an unsafe swallow, he also has dystonia, quadraplegic cerebral palsy, global development delay, and is unable to see (we are praying this will change with therapy).
When Otis was 6 months old we were admitted to hospital as he was just so poorly. We spent Christmas day in hospital before being transferred to a specialist Children’s hospital. We stayed at Alder Hey Children’s hopsital for 5 months. In this time Otis had 3 surgeries, and was trialled on various medications.
We have been home 4 months now, and it is so clear that early intervention is going to be key if we are to improve Otis’ quality of life. The NHS have been amazing, we can’t thank them enough for the care we received in Alder Hey. However the NHS is just so stretched and doesn’t cover what you would think is essential such as physio for a child that can’t hold his head up or a rain cover for a specialist wheelchair.
Learn more about Otis on Instagram