Hello! This is Teddy aka Teddybear, our beautiful, sweet two year old little boy from Bottesford in Notts.

With every cell in my body I wish we could rewrite the past for our precious baby but slowly, my brain is accepting we can’t do that. Instead, we are refocusing on what we can do which is everything possible to try and brighten his future.

Teddy became very poorly when he was just 10 days old. He was admitted to the paediatric intensive care unit and was treated for sepsis. After numerous tests he was diagnosed with a viral meningitis. It was the most terrifying time in our lives. Teddy surprised the doctors by coming off the ventilator much earlier than expected. However, despite this amazing progress, he started to have seizures requiring urgent rescue medicine. Until then there were no neurological concerns but an MRI scan later revealed our perfect baby boy had been left with a brain injury caused by the virus.

The injury was initially described as mild and we were told Teddy would be at low risk of having movement difficulties, cognitive impairment and epilepsy. However, the next few months revealed the opposite to be true. Not only was Teddy not meeting developmental milestones, he was constantly in and out of hospital with uncontrollable seizures. In spite of medication increases, Teddy ended up in PICU for the second time at just 4 months old after an EEG revealed he was in non-convulsive status epilepticus. Further MRI scans revealed Teddy’s brain injury wasn’t mild but was actually severe and we were told he would likely have multiple seizures every day and a significantly reduced quality of life, only sit in a chair and not being able to communicate. For the second time, our world was broken.

Teddy was in hospital for 5 weeks before being discharged on a concoction of anti-epileptics which made him extremely drowsy and didn’t even control his seizures but thankfully at 7 months old he was started on the ketogenic diet. Since then, we have been able to reduce his anti-epileptics to just 1, and he hasn’t required any rescue medicine for 20 months!

Teddy is diagnosed with a significant acquired brain injury, drug resistant epilepsy, four limb dyskinetic cerebral palsy and cortical visual impairment. However, Teddy is in a much better place than we ever thought possible. Teddy smiles, he laughs, he rolls around on the floor, he uses his hands to play with his bells, he has the most beautiful voice, he lets us know when he’s not happy, he wolfs down his dinners and he splashes in the bath. He is on his own path of Teddy milestones and is basically just amazing.

For over a year we have been deliberating on whether to start this campaign but as any parent would, we want to give our baby the best life possible. For Teddy, this includes specialised equipment and therapies. I’ve joked a couple of times and likened the disability world to the wedding world where everything is automatically more expensive but actually it is no joke. And so that is why we are now asking for your help. The kindness we have received thus far and desires to help Teddy have been incredibly heartwarming and for that we are so grateful.

The money we raise for Just4Children would go towards providing Teddy with:

a P-Pod to improve his comfort, sensory toys to aid his development and practical equipment such as his GoTo seat and special lenses for his glasses;

consistent regular physiotherapy which is so beneficial for Teddy especially now he is more alert and receptive, hippotherapy to give Teddy a little more head and trunk control and consistent holistic therapies such as developmental baby massage have already helped Teddy so much;

and finally, intensive therapies such as Anat Baniel Method (ABM) where the gentle approach helps his brain learn through movement and Dynamic Movement Intervention (DMI) therapy as Teddy really does love movement and vestibular input.

From the bottom of our hearts, we want to thank you for taking the time to read and hopefully share Teddy’s story and for donating if you are able.

Thank you so much again,

Lauren, Stuart, Robert and Teddybear

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