Toddler started refusing drink and sleeping all day and now family doesn't know what future holds

Toddler started refusing drink and sleeping all day and now family doesn't know what future holds Their lives were turned upside-down overnight A toddler began refusing to drink and sleeping all day - now his family don't know what the future looks like. Perry Brand and Libbi Peterson first noticed their son Henry “wasn’t himself” in August and took him to the GP. His strange symptoms were put down to teething and being a fast-growing child. But soon after, Henry’s symptoms worsened, becoming sleepy, developing headaches and having low sugar levels. After taking him to hospital for further checks, his parents were advised to give the tot paracetamol and sugar as needed. Viral swab and blood tests were also carried out, but after showing nothing, he was again sent home. Perry, from Gillingham, Kent, said: “We kind of took it for what it was – we didn't know any different because he wasn't showing any other signs. Then we went back to the doctor because we knew something was seriously wrong. He would be lying on the sofa for the whole day. He had been slapping his head and rubbing his eye - to the point where he was almost gouging his eyes.” Although the GP still could not find anything wrong, Henry was referred back to the hospital as a precaution. After his parents pushed for staff to carry out a CT scan, within 20 minutes they were told that their son had a brain tumour. He was transferred straight away to King’s College Hospital in London. Perry said: “Before this, he was a happy boy, running around. We were getting him ready to go to nursery. None of us could have imagined how dramatically our lives would change this year.” Emergency surgery Further CT and MRI scans at the hospital showed the large tumour was across his right eye. The 20-month-old underwent emergency surgery to put a shunt in his brain to drain the fluid and remove the pressure from his head. But, not long after, he again took a turn for the worse with his previous eating, drinking and sleeping issues returning. He was taken back to Medway Hospital and several X-rays showed that his condition was worsening. His dad said: “The cyst had gotten so big and was causing so much pressure that it was causing him to be asleep almost 24/7. He was essentially non-responsive and being violently sick and we were just there thinking ‘what is going on?’ - it was a really big shock to the system.” He was taken back to King’s the next day and admitted straight to A&E, where he underwent another operation to externalise his shunt due to the fluid not draining. Perry said: “It's pretty much been non-stop since then. It's a bit of a vicious cycle at the moment.” Fundraiser set up Further scans showed the cysts had grown in a different area and the toddler has now undergone surgery again to remove the shunt and put in an external drain on his head. While they remain at their son’s side at hospital, a fundraiser has been set up to help support Perry and Libbi. The dad, who is the breadwinner for the family, is currently unable to carry out his job as a security system engineer and their daughter Maia is being cared for and taken to school by friends and family. When Henry can be discharged, money raised from the GoFundMe page will also be used to create adaptations at their home and specialist equipment for him. Perry said: “Our little boy has had to go through things that no child should have to experience and we're now trying to make sure that when he comes home, our home is somewhere he can be safe, comfortable and cared for properly.” The couple said they were currently doing everything they could to access the support available through the NHS, local authority, benefits and charitable organisations. Unknown future The dad added: “But anyone who has suddenly found themselves caring for a seriously ill child will understand that there are also many costs and practical problems that don't neatly fit into one funding system. We don't yet know exactly what Henry's future needs will be – that's one of the hardest parts. “His treatment and investigations are ongoing, and his doctors are still determining how his condition will affect him as he grows. Rather than waiting until we're faced with each expense individually, we're trying to prepare now so that when Henry needs something, we can provide it without having to choose between his needs and keeping our household running.”