Georgie and Us Fundraiser @ Habbydays

We’re very lucky to have received 80% funding for George’s much needed new car seat. To raise the rest of the money George’s aunt is having a fundraising day at her shop on June 29th 2019.

There will be a competition, cake sale, charity upcycle and pattern sale, special offers instore and a Sew inspired temporary tattoo parlour on the day.

Auntie Gayle will also be completing a full 24 hour sewing session which will be livestreamed via Habbydays’ facebook page.

You can donate or sponsor George’s Aunt on our Gofundme page

Complex Conditions

Our George not wanting to be straightforward has several conditions. We thought it would be helpful to kind of have an index of George’s conditions and needs to which we’ll link more information to each and update as we go along our adventure with our little hero.

Meningitis

Hydrocephalus

Lennox Gastaut Syndrome

Medically Refractory Epilepsy

Visual Imparment with Pale Optic Discs

Hearing Impairment

Cerebral Palsy

Global Development Impairment

Hyper Flexible Mobility

Dysphagia (unsafe swallow)

PEG (percutaneous endoscopic gastrostomy)

The Beginning

In late 2015, we welcomed a new beautiful, bouncing baby boy into our family. George had a normal birth with Mum having no complications during pregnancy.

Sadly when George was 2 months old, he was diagnosed with a mild ear infection. Within days of being prescribed the appropriate antibiotics George’s health took a turn for the worse. Mum noticed that George was rocking himself in his Moses basket in the early hours of Sunday morning. Doing her due diligence, she checked George over and he was fine. No temperature or symptoms pointing to anything sinister.

After waking on Sunday morning, George was moving in an odd way… a kind of silent hiccup. Still no temperature or other symptoms that the Dr. hadn’t already seen. Regardless, as a family we rushed George to our local hospital and waited to be seen.

Unfortunately, we had to wait over 2 hours to see a Dr. and in that time George’s health deteriorated. The weird movement was getting worse, he was incredibly pale and he had started to hold his breath. We had no idea what was going on. George was still responsive, able to look up and around but we knew something was really wrong. I was holding George and felt him starting to slip away, feeling completely helpless and ready to administer CPR. Why hadn’t the Dr seen us already? I made a deal with the little lad in my arms that if he didn’t die, I’d do everything in my power to keep him safe.

Finally the Dr. called George in. Mum carried her poorly baby into the room and within seconds the Dr. was back out and we were running with George to the children’s unit. Before we knew it George had medical staff all over him, he was making a horrific noise and we had to be hands off. I sat with George’s older brother trying to block out the noise and trying to keep calm. Messaging George’s Dad and our Mum to let them know as best I could about what was happening. All I heard was that George was very, very ill. It felt like a lifetime that we sat there, I had no idea what was going through my baby sister’s (George’s Mum) head.

Then we were running again, this time to the High Dependency Unit. I heard George’s Dr demanding an CT scan to check George for a bleed on the brain and I think that’s when it hit. George really could be dying. Our local hospital doesn’t have a Pediatric Intensive Care Unit so George’s Dr had to find him a place somewhere in the country.

After getting onto HDU, we were told that that funny little silent hiccup was a seizure. But now they were lasting longer, George had lines in his tiny body and oxygen to support his breathing but he was just getting worse. His seizures were bad enough but the poor little lad had severe apnoea. The Dr uttered a word no body wants to hear: meningitis. “Your baby is very, very poorly” was the understatement of the year from George’s Dr.

The hospital staff were doing everything they could for George, the CT scan showed no bleed on the brain and looked normal. Nonetheless, the decision was made that George had to be intubated after having 16 apnoea episodes within one hour to enable him to continue breathing. A CATS team was called and a bed found at St Mary’s Hospital in London which would be George’s best chance at survival. George’s temperature had dropped and he now had hypothermia an emergency blood transfusion was ordered as George’s blood count was dangerously low. He needed to be intubated immediately and before he could be moved.

The NHS is an amazing organisation but sadly there is just not enough funding to provide families with the best equipment for disabled people. If you are able to please donate to Georgie’s fund here:

This fund pays for Georgie's equipment not covered by the NHS such as carseats and additional physiotherapy items. We always appreciate a share so that we can spread the word about complex medical needs like Georgie's.